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WASHINGTON — For years, oncologist Jonathan Peled, MD, PhD, and his colleagues at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City have been documenting gut microbiota disruption during allogeneic hematopoietic stem cell transplantation (allo-HSCT) and its role in frequent and potentially fatal bloodstream infections (BSIs) in the first 100 days after transplant.

Modulating microbiome composition to improve outcomes after allo-HSCT for hematological malignancies is a prime goal, and at the Gut Microbiota for Health (GMFH) World Summit 2025, Peled shared two new findings.

In one study, his team found that sucrose can exacerbate antibiotic-induced microbiome injury in patients undergoing allo-HSCT — a finding that “raises the question of whether our dietary recommendations [for] allo-HSCT patients are correct,” said Peled, assistant attending at MSKCC, during a session on the gut microbiome and oncology.

And in another study, they found that a rationally designed probiotic formulation may help lower the incidence of bacterial BSIs. In December 2024, the probiotic formulation (SER-155, Seres Therapeutics, Inc.) was granted breakthrough therapy designation by the FDA.

With immunotherapies more broadly, researchers are increasingly looking at diet and modulation of the microbiome to improve both treatment tolerance and efficacy, experts said at the meeting convened by the AGA and the European Society of Neurogastroenterology and Motility.

“Cancer patients and caregivers are asking, ‘What should I eat?’” said Carrie Daniel-MacDougall, PhD, MPH, a nutritional epidemiologist at the University of Texas MD Anderson Cancer Center in Houston. “They’re not just focused on side effects — they want a good outcome for their treatment, and they’re exploring a lot of dietary strategies [for which there] is not a lot of evidence.”

Clinicians are challenged by the fact that “we don’t typically collect dietary data in clinical trials of cancer drugs,” leaving them to extrapolate from evidence-based diet guidelines for cancer prevention, Daniel-MacDougall said.

But “I think that’s starting to shift,” she said, with the microbiome being increasingly recognized for its potential influences on therapeutic response and clinical trials underway looking at “a healthy dietary pattern not just for prevention but survival.”

 

Diet and Probiotics After allo-HSCT

The patterns of microbiota disruption during allo-HSCT — a procedure that includes antibiotic administration, chemotherapy, and sometimes irradiation — are characterized by loss of diversity and the expansion of potentially pathogenic organisms, most commonly Enterococcus, said Peled.

This has been demonstrated across transplantation centers. In a multicenter, international study published in 2020, the patterns of microbiota disruption and their impact on mortality were similar across MSK and other transplantation centers, with higher diversity of intestinal microbiota associated with lower mortality.

Other studies have shown that Enterococcus domination alone (defined arbitrarily as > 30% of fecal microbial composition) is associated with graft vs host disease and higher mortality after allo-HSCT and that intestinal domination by Proteobacteria coincides temporally with BSIs, he said.

Autologous fecal microbiota transplantation (FMT) has been shown to largely restore the microbiota composition the patient had before antibiotic treatment and allo-HSCT, he said, making fecal sample banking and posttreatment FMT a potential approach for reconstituting the gut microbiome and improving outcomes.

But “lately we’ve been very interested in diet for modulating [harmful] patterns” in the microbiome composition, Peled said.

In the new study suggesting a role for sugar avoidance, published last year as a bioRxiv preprint, Peled and his colleagues collected real-time dietary intake data (40,702 food entries) from 173 patients hospitalized for several weeks for allo-HSCT at MSK and analyzed it alongside longitudinally collected fecal samples. They used a Bayesian mixed-effects model to identify dietary components that may correlate with microbial disruption.

“What jumped out as very predictive of a low diversity fecal sample [and expansion of Enterococcus] in the 2 days prior to collection was the interaction between antibiotics and the consumption of sweets” — foods rich in simple sugars, Peled said. The relationship between sugar and the microbiome occurred only during periods of antibiotic exposure.

“And it was particularly perplexing because the foods that fall into the ‘sweets’ category are foods we encourage people to eat clinically when they’re not feeling well and food intake drops dramatically,” he said. This includes foods like nutritional drinks or shakes, Italian ice, gelatin dessert, and sports drinks.

(In a mouse model of post-antibiotic Enterococcus expansion, Peled and his co-investigators then validated the findings and ruled out the impact of any reductions in fiber.)

In addition to possibly revising dietary recommendations for patients undergoing allo-HSCT, the findings raise the question of whether avoiding sugar intake while on antibiotics, in general, is a way to mitigate antibiotic-induced dysbiosis, he said.

To test the role of probiotics, Peled and colleagues collaborated with Seres Therapeutics on a phase 1b trial of an oral combination (SER-155) of 16 fermented strains “selected rationally,” he said, for their ability to decolonize gut pathogens, improve gut barrier function (in vitro), and reduce gut inflammation and local immune activation.

After a safety lead-in, patients were randomized to receive SER-155 (20) or placebo (14) three times — prior to transplant, upon neutrophil engraftment (with vancomycin “conditioning”), and after transplant. “The strains succeeded in grafting in the [gastrointestinal] GI tract…and some of them persisted all the way through to day 100,” Peled said.

The incidence of pathogen domination was substantially lower in the probiotic recipients compared to an MSK historical control cohort, and the incidence of BSIs was significantly lower compared to the placebo arm (10% vs 43%, respectively, representing a 77% relative risk reduction), he said.

 

Diet and Immunotherapy Response: Trials at MD Anderson

One of the first trials Daniel-MacDougall launched at MD Anderson on diet and the microbiome randomized 55 patients who were obese and had a history of colorectal cancer or precancerous polyps to add a cup of beans to their usual diet or to continue their usual diet without beans. There was a crossover at 8 weeks in the 16-week BE GONE trial; stool and fasting blood were collected every 4 weeks.

“Beans are a prebiotic super-house in my opinion, and they’re also something this population would avoid,” said Daniel-MacDougall, associate professor in the department of epidemiology at MD Anderson and faculty director of the Bionutrition Research Core and Research Kitchen.

“We saw a modest increase in alpha diversity [in the intervention group] and similar trends with microbiota-derived metabolites” that regressed when patients returned to their usual diet, she said. The researchers also documented decreases in proteomic biomarkers of intestinal and systemic immune and inflammatory response.

The impact of diet on cancer survival was shown in subsequent research, including an observational study published in Science in 2021 of patients with melanoma receiving immune checkpoint blockade (ICB) treatment. “Patients who consumed insufficient dietary fiber at the start of therapy tended to do worse [than those reporting sufficient fiber intake],” with significantly lower progression-free survival, Daniel-MacDougall said.

“And interestingly, when we looked at dietary fiber [with and without] probiotic use, patients who had sufficient fiber but did not take probiotics did the best,” she said. [The probiotics were not endorsed or selected by their physicians.]

Now, the researchers at MD Anderson are moving into “precision nutrition” research, Daniel-MacDougall said, with a phase 2 randomized, double-blind trial of high dietary fiber intake (a target of 50 g/d from whole foods) vs a healthy control diet (20 g/d of fiber) in patients with melanoma receiving ICB.

The study, which is underway, is a fully controlled feeding study, with all meals and snacks provided by MD Anderson and macronutrients controlled. Researchers are collecting blood, stool, and tumor tissue (if available) to answer questions about the microbiome, changes in systemic and tissue immunity, disease response and immunotherapy toxicity, and other issues.

Peled disclosed IP licensing and research support from Seres Therapeutics; consulting with Da Volterra, MaaT Pharma, and CSL Behring; and advisory/equity with Postbiotics + Research LLC and Prodigy Biosciences. Daniel-MacDougall reported having no disclosures.

A version of this article appeared on Medscape.com.

WASHINGTON — For years, oncologist Jonathan Peled, MD, PhD, and his colleagues at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City have been documenting gut microbiota disruption during allogeneic hematopoietic stem cell transplantation (allo-HSCT) and its role in frequent and potentially fatal bloodstream infections (BSIs) in the first 100 days after transplant.

Modulating microbiome composition to improve outcomes after allo-HSCT for hematological malignancies is a prime goal, and at the Gut Microbiota for Health (GMFH) World Summit 2025, Peled shared two new findings.

In one study, his team found that sucrose can exacerbate antibiotic-induced microbiome injury in patients undergoing allo-HSCT — a finding that “raises the question of whether our dietary recommendations [for] allo-HSCT patients are correct,” said Peled, assistant attending at MSKCC, during a session on the gut microbiome and oncology.

And in another study, they found that a rationally designed probiotic formulation may help lower the incidence of bacterial BSIs. In December 2024, the probiotic formulation (SER-155, Seres Therapeutics, Inc.) was granted breakthrough therapy designation by the FDA.

With immunotherapies more broadly, researchers are increasingly looking at diet and modulation of the microbiome to improve both treatment tolerance and efficacy, experts said at the meeting convened by the AGA and the European Society of Neurogastroenterology and Motility.

“Cancer patients and caregivers are asking, ‘What should I eat?’” said Carrie Daniel-MacDougall, PhD, MPH, a nutritional epidemiologist at the University of Texas MD Anderson Cancer Center in Houston. “They’re not just focused on side effects — they want a good outcome for their treatment, and they’re exploring a lot of dietary strategies [for which there] is not a lot of evidence.”

Clinicians are challenged by the fact that “we don’t typically collect dietary data in clinical trials of cancer drugs,” leaving them to extrapolate from evidence-based diet guidelines for cancer prevention, Daniel-MacDougall said.

But “I think that’s starting to shift,” she said, with the microbiome being increasingly recognized for its potential influences on therapeutic response and clinical trials underway looking at “a healthy dietary pattern not just for prevention but survival.”

 

Diet and Probiotics After allo-HSCT

The patterns of microbiota disruption during allo-HSCT — a procedure that includes antibiotic administration, chemotherapy, and sometimes irradiation — are characterized by loss of diversity and the expansion of potentially pathogenic organisms, most commonly Enterococcus, said Peled.

This has been demonstrated across transplantation centers. In a multicenter, international study published in 2020, the patterns of microbiota disruption and their impact on mortality were similar across MSK and other transplantation centers, with higher diversity of intestinal microbiota associated with lower mortality.

Other studies have shown that Enterococcus domination alone (defined arbitrarily as > 30% of fecal microbial composition) is associated with graft vs host disease and higher mortality after allo-HSCT and that intestinal domination by Proteobacteria coincides temporally with BSIs, he said.

Autologous fecal microbiota transplantation (FMT) has been shown to largely restore the microbiota composition the patient had before antibiotic treatment and allo-HSCT, he said, making fecal sample banking and posttreatment FMT a potential approach for reconstituting the gut microbiome and improving outcomes.

But “lately we’ve been very interested in diet for modulating [harmful] patterns” in the microbiome composition, Peled said.

In the new study suggesting a role for sugar avoidance, published last year as a bioRxiv preprint, Peled and his colleagues collected real-time dietary intake data (40,702 food entries) from 173 patients hospitalized for several weeks for allo-HSCT at MSK and analyzed it alongside longitudinally collected fecal samples. They used a Bayesian mixed-effects model to identify dietary components that may correlate with microbial disruption.

“What jumped out as very predictive of a low diversity fecal sample [and expansion of Enterococcus] in the 2 days prior to collection was the interaction between antibiotics and the consumption of sweets” — foods rich in simple sugars, Peled said. The relationship between sugar and the microbiome occurred only during periods of antibiotic exposure.

“And it was particularly perplexing because the foods that fall into the ‘sweets’ category are foods we encourage people to eat clinically when they’re not feeling well and food intake drops dramatically,” he said. This includes foods like nutritional drinks or shakes, Italian ice, gelatin dessert, and sports drinks.

(In a mouse model of post-antibiotic Enterococcus expansion, Peled and his co-investigators then validated the findings and ruled out the impact of any reductions in fiber.)

In addition to possibly revising dietary recommendations for patients undergoing allo-HSCT, the findings raise the question of whether avoiding sugar intake while on antibiotics, in general, is a way to mitigate antibiotic-induced dysbiosis, he said.

To test the role of probiotics, Peled and colleagues collaborated with Seres Therapeutics on a phase 1b trial of an oral combination (SER-155) of 16 fermented strains “selected rationally,” he said, for their ability to decolonize gut pathogens, improve gut barrier function (in vitro), and reduce gut inflammation and local immune activation.

After a safety lead-in, patients were randomized to receive SER-155 (20) or placebo (14) three times — prior to transplant, upon neutrophil engraftment (with vancomycin “conditioning”), and after transplant. “The strains succeeded in grafting in the [gastrointestinal] GI tract…and some of them persisted all the way through to day 100,” Peled said.

The incidence of pathogen domination was substantially lower in the probiotic recipients compared to an MSK historical control cohort, and the incidence of BSIs was significantly lower compared to the placebo arm (10% vs 43%, respectively, representing a 77% relative risk reduction), he said.

 

Diet and Immunotherapy Response: Trials at MD Anderson

One of the first trials Daniel-MacDougall launched at MD Anderson on diet and the microbiome randomized 55 patients who were obese and had a history of colorectal cancer or precancerous polyps to add a cup of beans to their usual diet or to continue their usual diet without beans. There was a crossover at 8 weeks in the 16-week BE GONE trial; stool and fasting blood were collected every 4 weeks.

“Beans are a prebiotic super-house in my opinion, and they’re also something this population would avoid,” said Daniel-MacDougall, associate professor in the department of epidemiology at MD Anderson and faculty director of the Bionutrition Research Core and Research Kitchen.

“We saw a modest increase in alpha diversity [in the intervention group] and similar trends with microbiota-derived metabolites” that regressed when patients returned to their usual diet, she said. The researchers also documented decreases in proteomic biomarkers of intestinal and systemic immune and inflammatory response.

The impact of diet on cancer survival was shown in subsequent research, including an observational study published in Science in 2021 of patients with melanoma receiving immune checkpoint blockade (ICB) treatment. “Patients who consumed insufficient dietary fiber at the start of therapy tended to do worse [than those reporting sufficient fiber intake],” with significantly lower progression-free survival, Daniel-MacDougall said.

“And interestingly, when we looked at dietary fiber [with and without] probiotic use, patients who had sufficient fiber but did not take probiotics did the best,” she said. [The probiotics were not endorsed or selected by their physicians.]

Now, the researchers at MD Anderson are moving into “precision nutrition” research, Daniel-MacDougall said, with a phase 2 randomized, double-blind trial of high dietary fiber intake (a target of 50 g/d from whole foods) vs a healthy control diet (20 g/d of fiber) in patients with melanoma receiving ICB.

The study, which is underway, is a fully controlled feeding study, with all meals and snacks provided by MD Anderson and macronutrients controlled. Researchers are collecting blood, stool, and tumor tissue (if available) to answer questions about the microbiome, changes in systemic and tissue immunity, disease response and immunotherapy toxicity, and other issues.

Peled disclosed IP licensing and research support from Seres Therapeutics; consulting with Da Volterra, MaaT Pharma, and CSL Behring; and advisory/equity with Postbiotics + Research LLC and Prodigy Biosciences. Daniel-MacDougall reported having no disclosures.

A version of this article appeared on Medscape.com.

WASHINGTON — For years, oncologist Jonathan Peled, MD, PhD, and his colleagues at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City have been documenting gut microbiota disruption during allogeneic hematopoietic stem cell transplantation (allo-HSCT) and its role in frequent and potentially fatal bloodstream infections (BSIs) in the first 100 days after transplant.

Modulating microbiome composition to improve outcomes after allo-HSCT for hematological malignancies is a prime goal, and at the Gut Microbiota for Health (GMFH) World Summit 2025, Peled shared two new findings.

In one study, his team found that sucrose can exacerbate antibiotic-induced microbiome injury in patients undergoing allo-HSCT — a finding that “raises the question of whether our dietary recommendations [for] allo-HSCT patients are correct,” said Peled, assistant attending at MSKCC, during a session on the gut microbiome and oncology.

And in another study, they found that a rationally designed probiotic formulation may help lower the incidence of bacterial BSIs. In December 2024, the probiotic formulation (SER-155, Seres Therapeutics, Inc.) was granted breakthrough therapy designation by the FDA.

With immunotherapies more broadly, researchers are increasingly looking at diet and modulation of the microbiome to improve both treatment tolerance and efficacy, experts said at the meeting convened by the AGA and the European Society of Neurogastroenterology and Motility.

“Cancer patients and caregivers are asking, ‘What should I eat?’” said Carrie Daniel-MacDougall, PhD, MPH, a nutritional epidemiologist at the University of Texas MD Anderson Cancer Center in Houston. “They’re not just focused on side effects — they want a good outcome for their treatment, and they’re exploring a lot of dietary strategies [for which there] is not a lot of evidence.”

Clinicians are challenged by the fact that “we don’t typically collect dietary data in clinical trials of cancer drugs,” leaving them to extrapolate from evidence-based diet guidelines for cancer prevention, Daniel-MacDougall said.

But “I think that’s starting to shift,” she said, with the microbiome being increasingly recognized for its potential influences on therapeutic response and clinical trials underway looking at “a healthy dietary pattern not just for prevention but survival.”

 

Diet and Probiotics After allo-HSCT

The patterns of microbiota disruption during allo-HSCT — a procedure that includes antibiotic administration, chemotherapy, and sometimes irradiation — are characterized by loss of diversity and the expansion of potentially pathogenic organisms, most commonly Enterococcus, said Peled.

This has been demonstrated across transplantation centers. In a multicenter, international study published in 2020, the patterns of microbiota disruption and their impact on mortality were similar across MSK and other transplantation centers, with higher diversity of intestinal microbiota associated with lower mortality.

Other studies have shown that Enterococcus domination alone (defined arbitrarily as > 30% of fecal microbial composition) is associated with graft vs host disease and higher mortality after allo-HSCT and that intestinal domination by Proteobacteria coincides temporally with BSIs, he said.

Autologous fecal microbiota transplantation (FMT) has been shown to largely restore the microbiota composition the patient had before antibiotic treatment and allo-HSCT, he said, making fecal sample banking and posttreatment FMT a potential approach for reconstituting the gut microbiome and improving outcomes.

But “lately we’ve been very interested in diet for modulating [harmful] patterns” in the microbiome composition, Peled said.

In the new study suggesting a role for sugar avoidance, published last year as a bioRxiv preprint, Peled and his colleagues collected real-time dietary intake data (40,702 food entries) from 173 patients hospitalized for several weeks for allo-HSCT at MSK and analyzed it alongside longitudinally collected fecal samples. They used a Bayesian mixed-effects model to identify dietary components that may correlate with microbial disruption.

“What jumped out as very predictive of a low diversity fecal sample [and expansion of Enterococcus] in the 2 days prior to collection was the interaction between antibiotics and the consumption of sweets” — foods rich in simple sugars, Peled said. The relationship between sugar and the microbiome occurred only during periods of antibiotic exposure.

“And it was particularly perplexing because the foods that fall into the ‘sweets’ category are foods we encourage people to eat clinically when they’re not feeling well and food intake drops dramatically,” he said. This includes foods like nutritional drinks or shakes, Italian ice, gelatin dessert, and sports drinks.

(In a mouse model of post-antibiotic Enterococcus expansion, Peled and his co-investigators then validated the findings and ruled out the impact of any reductions in fiber.)

In addition to possibly revising dietary recommendations for patients undergoing allo-HSCT, the findings raise the question of whether avoiding sugar intake while on antibiotics, in general, is a way to mitigate antibiotic-induced dysbiosis, he said.

To test the role of probiotics, Peled and colleagues collaborated with Seres Therapeutics on a phase 1b trial of an oral combination (SER-155) of 16 fermented strains “selected rationally,” he said, for their ability to decolonize gut pathogens, improve gut barrier function (in vitro), and reduce gut inflammation and local immune activation.

After a safety lead-in, patients were randomized to receive SER-155 (20) or placebo (14) three times — prior to transplant, upon neutrophil engraftment (with vancomycin “conditioning”), and after transplant. “The strains succeeded in grafting in the [gastrointestinal] GI tract…and some of them persisted all the way through to day 100,” Peled said.

The incidence of pathogen domination was substantially lower in the probiotic recipients compared to an MSK historical control cohort, and the incidence of BSIs was significantly lower compared to the placebo arm (10% vs 43%, respectively, representing a 77% relative risk reduction), he said.

 

Diet and Immunotherapy Response: Trials at MD Anderson

One of the first trials Daniel-MacDougall launched at MD Anderson on diet and the microbiome randomized 55 patients who were obese and had a history of colorectal cancer or precancerous polyps to add a cup of beans to their usual diet or to continue their usual diet without beans. There was a crossover at 8 weeks in the 16-week BE GONE trial; stool and fasting blood were collected every 4 weeks.

“Beans are a prebiotic super-house in my opinion, and they’re also something this population would avoid,” said Daniel-MacDougall, associate professor in the department of epidemiology at MD Anderson and faculty director of the Bionutrition Research Core and Research Kitchen.

“We saw a modest increase in alpha diversity [in the intervention group] and similar trends with microbiota-derived metabolites” that regressed when patients returned to their usual diet, she said. The researchers also documented decreases in proteomic biomarkers of intestinal and systemic immune and inflammatory response.

The impact of diet on cancer survival was shown in subsequent research, including an observational study published in Science in 2021 of patients with melanoma receiving immune checkpoint blockade (ICB) treatment. “Patients who consumed insufficient dietary fiber at the start of therapy tended to do worse [than those reporting sufficient fiber intake],” with significantly lower progression-free survival, Daniel-MacDougall said.

“And interestingly, when we looked at dietary fiber [with and without] probiotic use, patients who had sufficient fiber but did not take probiotics did the best,” she said. [The probiotics were not endorsed or selected by their physicians.]

Now, the researchers at MD Anderson are moving into “precision nutrition” research, Daniel-MacDougall said, with a phase 2 randomized, double-blind trial of high dietary fiber intake (a target of 50 g/d from whole foods) vs a healthy control diet (20 g/d of fiber) in patients with melanoma receiving ICB.

The study, which is underway, is a fully controlled feeding study, with all meals and snacks provided by MD Anderson and macronutrients controlled. Researchers are collecting blood, stool, and tumor tissue (if available) to answer questions about the microbiome, changes in systemic and tissue immunity, disease response and immunotherapy toxicity, and other issues.

Peled disclosed IP licensing and research support from Seres Therapeutics; consulting with Da Volterra, MaaT Pharma, and CSL Behring; and advisory/equity with Postbiotics + Research LLC and Prodigy Biosciences. Daniel-MacDougall reported having no disclosures.

A version of this article appeared on Medscape.com.

A large 20-year study — the longest and most detailed of its kind — shows that posttraumatic stress disorder (PTSD) symptoms can endure for decades, challenging conventional timelines for recovery and offering new insights to guide future treatment.

Researchers analyzed data from the World Trade Center Health Program (WTCHP), which is administered by the US CDC’s National Institute for Occupational Safety and Health (NIOSH), and found symptoms of PTSD persisted for as long as two decades in 10% of first responders involved in the World Trade Center disaster of September 2001.

Participation in the WTCHP is voluntary, but those who enroll receive free assessments, monitoring, and treatment, including psychiatric and behavioral healthcare. It is the longest and most detailed analysis of PTSD and includes 81,298 observations from 12,822 WTC responders.

Participants entered the WTCHP at different timepoints and were assessed annually. Not every enrollee was assessed every year, but the sheer number of participants and observations “just provides much greater density of data over that 20-year course than any previous study,” lead author Frank D. Mann, PhD, told this news organization.

The study was published online on May 27 in Nature Mental Health.

 

Filling the PTSD Knowledge Gap

Most PTSD research has focused on the short term, with limited insight into how symptoms evolve over the long haul. Without long-term data, it’s been difficult to understand whether PTSD resolves, persists, or worsens — hindering efforts to guide treatment and support. This study aimed to fill that gap by tracking symptom patterns over two decades.

Responders were assessed regularly using the PTSD Checklist for a Specific Stressor, a standardized tool that measures symptom severity on an 85-point scale. On average, each participant completed 6.3 assessments over the course of the study.

A score of ≥ 44 was considered indicative of clinically elevated PTSD symptoms. Between 2002 and 2022, the crude prevalence of elevated symptoms ranged from 8% to 15%. At the same time, 16% to 34% of responders each year reported little to no symptoms, scoring at or near the minimum on the scale.

The researchers found that symptom trajectories varied widely. Nearly as many participants experienced worsening symptoms as those who improved. As a result, the overall population average remained relatively flat over the 20-year period.

Among responders who met the threshold for PTSD, the median time to symptom improvement was 8.9 years — and by year 20, about 76% had shown improvement.

 

New Insights

Mann, a senior research scientist at Stony Brook University Renaissance School of Medicine, Stony Brook, New York, said the study not only reinforced existing knowledge about PTSD in responders but also uncovered new insights.

Most notably, it showed that PTSD symptoms tended to peak around a decade after 9/11 — significantly later than delayed-onset patterns reported in previous trauma studies.

He also noted a surprising outcome — the top 10% of responders who experienced worsening symptoms over the long term accounted for the majority of mental health costs. These individuals, Mann said, represent a critical gap in care, with current interventions proving largely ineffective for them.

Mann suggested that ongoing trauma exposure — especially for responders still in high-risk jobs — and potential genetic susceptibility may contribute to late-emerging or persistent symptoms.

“These individuals are an urgent priority for health systems, as available resources have not been effective for them,” the study authors wrote.

Mann and his colleagues also found that occupation offered the strongest protection against developing PTSD. Police officers and firefighters benefit from training designed to help them cope with trauma, and repeated exposure may build a degree of resilience.

In contrast, responders without such training — like construction workers — faced a 50% to 55% higher risk of developing PTSD symptoms. Mann emphasized that occupational status was a more powerful predictor of PTSD risk than the severity of the traumatic exposures themselves.

 

A Valuable Contribution

Commenting on the research for this news organization, Sandra Lowe, MD, medical director of the Mount Sinai WTCMH program, noted that while the study largely confirms what has been known about responders — such as the significant variability in symptom trajectories over time — it still makes a valuable contribution.

“Extending observations for up to 20 years is rare in any study, especially in a cohort this large,” said Lowe, an associate professor of psychiatry at the Icahn School of Medicine at Mount Sinai, New York City, who was not involved in the study.

Also commenting, James West, MD, chair of the American Psychiatric Association’s Committee on the Psychiatric Dimensions of Disaster, described the finding that 10% of responders continued to experience symptoms two decades after exposure as “sobering.”

However, he emphasized that it aligns with observations in the disaster recovery community, where the psychological impact “goes way beyond what most people see as the immediate aftermath and recovery.” West stressed the urgent need to develop effective treatments that enable those affected to live fuller, less impaired lives.

“We still need to be finding the effective treatments that can help these people live fuller lives without impairment from their trauma symptoms,” said West.

Lowe pointed out that the symptom peak around 10 years post-exposure is often linked to external factors. Some responders who had been managing symptoms might lose resilience due to major life changes such as retirement.

“One of the things that was able to keep them engaged is now lost,” she said. “They begin to spend more time reflecting on recollections, and symptoms can worsen.”

West agreed, adding that retirement or job loss often leads to symptom increases because it removes a primary coping mechanism. Both Lowe and Mann also highlighted that 9/11 memorial events can trigger new symptoms or exacerbate existing ones.

Lowe noted that responders with stronger coping skills tended to fare better over time. Effective coping strategies include maintaining regular schedules — especially for eating and sleeping — leading a structured life, and employing stress management techniques like meditation, yoga, or enjoyable hobbies. Social connection and being part of a community are also critical for resilience. She added that clinicians should always inquire about trauma history.

Lowe, West, and Mann all pointed out that PTSD is often accompanied by physical health issues, particularly cardiovascular problems, which tend to be worse in those with the disorder.

Responders with stronger coping skills tended to do better over time, said Lowe. Coping skills that can help make a difference include having a regular schedule, especially for eating and sleeping; having a structured life; and stress management tools, such as meditation or yoga or an enjoyable hobby. Social connection — being part of a community — is also critical, Lowe said.

Clinicians should always inquire about trauma, she said. Lowe, West, and Mann all noted that people with PTSD often have physical illness and that cardiovascular outcomes in particular are worse for those individuals.

 

WTCHP Future Uncertain

However, despite advances in understanding PTSD and the importance of ongoing care, the future of the program supporting World Trade Center responders remains uncertain.

Some 140,000 people are now enrolled in the WTCHP, which was established as a federal program in 2010. Congress has generally reauthorized the program whenever its funding came up for renewal.

However, earlier this year, the Trump administration dismissed two thirds of the NIOSH workforce, including John Howard, MD, the administrator of the WTCHP.

In response, members of Congress and advocates for 9/11 survivors urged the US Department of Health and Human Services (HHS) to reinstate Howard and the affected employees. Howard is listed as back on the job has since returned to his position, and HHS reportedly reinstated hundreds of NIOSH workers in May.

An HHS spokesperson told this news organization that the WTCHP continues to provide services and is actively “accepting, reviewing, and processing new enrollment applications and certification requests.”

Meanwhile, the Trump administration’s fiscal year 2026 budget proposal seeks to reduce CDC funding by $3.5 billion — approximately 40% — with a shift in focus toward infectious diseases. It remains unclear how the WTCHP will be affected by this new direction.

Mann said he is not involved in the program’s funding details but added, “Presumably, as long as some funding continues to keep the program alive, we will continue monitoring responders and providing free treatment until the very last World Trade Center responder passes.”

The study was partially funded through National Institutes of Health and CDC grants, the SUNY Research Foundation, and the CDC’s World Trade Center Health Program. Mann, Lowe, and West reported having no relevant financial relationships.

A version of this article first appeared on Medscape.com.

A large 20-year study — the longest and most detailed of its kind — shows that posttraumatic stress disorder (PTSD) symptoms can endure for decades, challenging conventional timelines for recovery and offering new insights to guide future treatment.

Researchers analyzed data from the World Trade Center Health Program (WTCHP), which is administered by the US CDC’s National Institute for Occupational Safety and Health (NIOSH), and found symptoms of PTSD persisted for as long as two decades in 10% of first responders involved in the World Trade Center disaster of September 2001.

Participation in the WTCHP is voluntary, but those who enroll receive free assessments, monitoring, and treatment, including psychiatric and behavioral healthcare. It is the longest and most detailed analysis of PTSD and includes 81,298 observations from 12,822 WTC responders.

Participants entered the WTCHP at different timepoints and were assessed annually. Not every enrollee was assessed every year, but the sheer number of participants and observations “just provides much greater density of data over that 20-year course than any previous study,” lead author Frank D. Mann, PhD, told this news organization.

The study was published online on May 27 in Nature Mental Health.

 

Filling the PTSD Knowledge Gap

Most PTSD research has focused on the short term, with limited insight into how symptoms evolve over the long haul. Without long-term data, it’s been difficult to understand whether PTSD resolves, persists, or worsens — hindering efforts to guide treatment and support. This study aimed to fill that gap by tracking symptom patterns over two decades.

Responders were assessed regularly using the PTSD Checklist for a Specific Stressor, a standardized tool that measures symptom severity on an 85-point scale. On average, each participant completed 6.3 assessments over the course of the study.

A score of ≥ 44 was considered indicative of clinically elevated PTSD symptoms. Between 2002 and 2022, the crude prevalence of elevated symptoms ranged from 8% to 15%. At the same time, 16% to 34% of responders each year reported little to no symptoms, scoring at or near the minimum on the scale.

The researchers found that symptom trajectories varied widely. Nearly as many participants experienced worsening symptoms as those who improved. As a result, the overall population average remained relatively flat over the 20-year period.

Among responders who met the threshold for PTSD, the median time to symptom improvement was 8.9 years — and by year 20, about 76% had shown improvement.

 

New Insights

Mann, a senior research scientist at Stony Brook University Renaissance School of Medicine, Stony Brook, New York, said the study not only reinforced existing knowledge about PTSD in responders but also uncovered new insights.

Most notably, it showed that PTSD symptoms tended to peak around a decade after 9/11 — significantly later than delayed-onset patterns reported in previous trauma studies.

He also noted a surprising outcome — the top 10% of responders who experienced worsening symptoms over the long term accounted for the majority of mental health costs. These individuals, Mann said, represent a critical gap in care, with current interventions proving largely ineffective for them.

Mann suggested that ongoing trauma exposure — especially for responders still in high-risk jobs — and potential genetic susceptibility may contribute to late-emerging or persistent symptoms.

“These individuals are an urgent priority for health systems, as available resources have not been effective for them,” the study authors wrote.

Mann and his colleagues also found that occupation offered the strongest protection against developing PTSD. Police officers and firefighters benefit from training designed to help them cope with trauma, and repeated exposure may build a degree of resilience.

In contrast, responders without such training — like construction workers — faced a 50% to 55% higher risk of developing PTSD symptoms. Mann emphasized that occupational status was a more powerful predictor of PTSD risk than the severity of the traumatic exposures themselves.

 

A Valuable Contribution

Commenting on the research for this news organization, Sandra Lowe, MD, medical director of the Mount Sinai WTCMH program, noted that while the study largely confirms what has been known about responders — such as the significant variability in symptom trajectories over time — it still makes a valuable contribution.

“Extending observations for up to 20 years is rare in any study, especially in a cohort this large,” said Lowe, an associate professor of psychiatry at the Icahn School of Medicine at Mount Sinai, New York City, who was not involved in the study.

Also commenting, James West, MD, chair of the American Psychiatric Association’s Committee on the Psychiatric Dimensions of Disaster, described the finding that 10% of responders continued to experience symptoms two decades after exposure as “sobering.”

However, he emphasized that it aligns with observations in the disaster recovery community, where the psychological impact “goes way beyond what most people see as the immediate aftermath and recovery.” West stressed the urgent need to develop effective treatments that enable those affected to live fuller, less impaired lives.

“We still need to be finding the effective treatments that can help these people live fuller lives without impairment from their trauma symptoms,” said West.

Lowe pointed out that the symptom peak around 10 years post-exposure is often linked to external factors. Some responders who had been managing symptoms might lose resilience due to major life changes such as retirement.

“One of the things that was able to keep them engaged is now lost,” she said. “They begin to spend more time reflecting on recollections, and symptoms can worsen.”

West agreed, adding that retirement or job loss often leads to symptom increases because it removes a primary coping mechanism. Both Lowe and Mann also highlighted that 9/11 memorial events can trigger new symptoms or exacerbate existing ones.

Lowe noted that responders with stronger coping skills tended to fare better over time. Effective coping strategies include maintaining regular schedules — especially for eating and sleeping — leading a structured life, and employing stress management techniques like meditation, yoga, or enjoyable hobbies. Social connection and being part of a community are also critical for resilience. She added that clinicians should always inquire about trauma history.

Lowe, West, and Mann all pointed out that PTSD is often accompanied by physical health issues, particularly cardiovascular problems, which tend to be worse in those with the disorder.

Responders with stronger coping skills tended to do better over time, said Lowe. Coping skills that can help make a difference include having a regular schedule, especially for eating and sleeping; having a structured life; and stress management tools, such as meditation or yoga or an enjoyable hobby. Social connection — being part of a community — is also critical, Lowe said.

Clinicians should always inquire about trauma, she said. Lowe, West, and Mann all noted that people with PTSD often have physical illness and that cardiovascular outcomes in particular are worse for those individuals.

 

WTCHP Future Uncertain

However, despite advances in understanding PTSD and the importance of ongoing care, the future of the program supporting World Trade Center responders remains uncertain.

Some 140,000 people are now enrolled in the WTCHP, which was established as a federal program in 2010. Congress has generally reauthorized the program whenever its funding came up for renewal.

However, earlier this year, the Trump administration dismissed two thirds of the NIOSH workforce, including John Howard, MD, the administrator of the WTCHP.

In response, members of Congress and advocates for 9/11 survivors urged the US Department of Health and Human Services (HHS) to reinstate Howard and the affected employees. Howard is listed as back on the job has since returned to his position, and HHS reportedly reinstated hundreds of NIOSH workers in May.

An HHS spokesperson told this news organization that the WTCHP continues to provide services and is actively “accepting, reviewing, and processing new enrollment applications and certification requests.”

Meanwhile, the Trump administration’s fiscal year 2026 budget proposal seeks to reduce CDC funding by $3.5 billion — approximately 40% — with a shift in focus toward infectious diseases. It remains unclear how the WTCHP will be affected by this new direction.

Mann said he is not involved in the program’s funding details but added, “Presumably, as long as some funding continues to keep the program alive, we will continue monitoring responders and providing free treatment until the very last World Trade Center responder passes.”

The study was partially funded through National Institutes of Health and CDC grants, the SUNY Research Foundation, and the CDC’s World Trade Center Health Program. Mann, Lowe, and West reported having no relevant financial relationships.

A version of this article first appeared on Medscape.com.

A large 20-year study — the longest and most detailed of its kind — shows that posttraumatic stress disorder (PTSD) symptoms can endure for decades, challenging conventional timelines for recovery and offering new insights to guide future treatment.

Researchers analyzed data from the World Trade Center Health Program (WTCHP), which is administered by the US CDC’s National Institute for Occupational Safety and Health (NIOSH), and found symptoms of PTSD persisted for as long as two decades in 10% of first responders involved in the World Trade Center disaster of September 2001.

Participation in the WTCHP is voluntary, but those who enroll receive free assessments, monitoring, and treatment, including psychiatric and behavioral healthcare. It is the longest and most detailed analysis of PTSD and includes 81,298 observations from 12,822 WTC responders.

Participants entered the WTCHP at different timepoints and were assessed annually. Not every enrollee was assessed every year, but the sheer number of participants and observations “just provides much greater density of data over that 20-year course than any previous study,” lead author Frank D. Mann, PhD, told this news organization.

The study was published online on May 27 in Nature Mental Health.

 

Filling the PTSD Knowledge Gap

Most PTSD research has focused on the short term, with limited insight into how symptoms evolve over the long haul. Without long-term data, it’s been difficult to understand whether PTSD resolves, persists, or worsens — hindering efforts to guide treatment and support. This study aimed to fill that gap by tracking symptom patterns over two decades.

Responders were assessed regularly using the PTSD Checklist for a Specific Stressor, a standardized tool that measures symptom severity on an 85-point scale. On average, each participant completed 6.3 assessments over the course of the study.

A score of ≥ 44 was considered indicative of clinically elevated PTSD symptoms. Between 2002 and 2022, the crude prevalence of elevated symptoms ranged from 8% to 15%. At the same time, 16% to 34% of responders each year reported little to no symptoms, scoring at or near the minimum on the scale.

The researchers found that symptom trajectories varied widely. Nearly as many participants experienced worsening symptoms as those who improved. As a result, the overall population average remained relatively flat over the 20-year period.

Among responders who met the threshold for PTSD, the median time to symptom improvement was 8.9 years — and by year 20, about 76% had shown improvement.

 

New Insights

Mann, a senior research scientist at Stony Brook University Renaissance School of Medicine, Stony Brook, New York, said the study not only reinforced existing knowledge about PTSD in responders but also uncovered new insights.

Most notably, it showed that PTSD symptoms tended to peak around a decade after 9/11 — significantly later than delayed-onset patterns reported in previous trauma studies.

He also noted a surprising outcome — the top 10% of responders who experienced worsening symptoms over the long term accounted for the majority of mental health costs. These individuals, Mann said, represent a critical gap in care, with current interventions proving largely ineffective for them.

Mann suggested that ongoing trauma exposure — especially for responders still in high-risk jobs — and potential genetic susceptibility may contribute to late-emerging or persistent symptoms.

“These individuals are an urgent priority for health systems, as available resources have not been effective for them,” the study authors wrote.

Mann and his colleagues also found that occupation offered the strongest protection against developing PTSD. Police officers and firefighters benefit from training designed to help them cope with trauma, and repeated exposure may build a degree of resilience.

In contrast, responders without such training — like construction workers — faced a 50% to 55% higher risk of developing PTSD symptoms. Mann emphasized that occupational status was a more powerful predictor of PTSD risk than the severity of the traumatic exposures themselves.

 

A Valuable Contribution

Commenting on the research for this news organization, Sandra Lowe, MD, medical director of the Mount Sinai WTCMH program, noted that while the study largely confirms what has been known about responders — such as the significant variability in symptom trajectories over time — it still makes a valuable contribution.

“Extending observations for up to 20 years is rare in any study, especially in a cohort this large,” said Lowe, an associate professor of psychiatry at the Icahn School of Medicine at Mount Sinai, New York City, who was not involved in the study.

Also commenting, James West, MD, chair of the American Psychiatric Association’s Committee on the Psychiatric Dimensions of Disaster, described the finding that 10% of responders continued to experience symptoms two decades after exposure as “sobering.”

However, he emphasized that it aligns with observations in the disaster recovery community, where the psychological impact “goes way beyond what most people see as the immediate aftermath and recovery.” West stressed the urgent need to develop effective treatments that enable those affected to live fuller, less impaired lives.

“We still need to be finding the effective treatments that can help these people live fuller lives without impairment from their trauma symptoms,” said West.

Lowe pointed out that the symptom peak around 10 years post-exposure is often linked to external factors. Some responders who had been managing symptoms might lose resilience due to major life changes such as retirement.

“One of the things that was able to keep them engaged is now lost,” she said. “They begin to spend more time reflecting on recollections, and symptoms can worsen.”

West agreed, adding that retirement or job loss often leads to symptom increases because it removes a primary coping mechanism. Both Lowe and Mann also highlighted that 9/11 memorial events can trigger new symptoms or exacerbate existing ones.

Lowe noted that responders with stronger coping skills tended to fare better over time. Effective coping strategies include maintaining regular schedules — especially for eating and sleeping — leading a structured life, and employing stress management techniques like meditation, yoga, or enjoyable hobbies. Social connection and being part of a community are also critical for resilience. She added that clinicians should always inquire about trauma history.

Lowe, West, and Mann all pointed out that PTSD is often accompanied by physical health issues, particularly cardiovascular problems, which tend to be worse in those with the disorder.

Responders with stronger coping skills tended to do better over time, said Lowe. Coping skills that can help make a difference include having a regular schedule, especially for eating and sleeping; having a structured life; and stress management tools, such as meditation or yoga or an enjoyable hobby. Social connection — being part of a community — is also critical, Lowe said.

Clinicians should always inquire about trauma, she said. Lowe, West, and Mann all noted that people with PTSD often have physical illness and that cardiovascular outcomes in particular are worse for those individuals.

 

WTCHP Future Uncertain

However, despite advances in understanding PTSD and the importance of ongoing care, the future of the program supporting World Trade Center responders remains uncertain.

Some 140,000 people are now enrolled in the WTCHP, which was established as a federal program in 2010. Congress has generally reauthorized the program whenever its funding came up for renewal.

However, earlier this year, the Trump administration dismissed two thirds of the NIOSH workforce, including John Howard, MD, the administrator of the WTCHP.

In response, members of Congress and advocates for 9/11 survivors urged the US Department of Health and Human Services (HHS) to reinstate Howard and the affected employees. Howard is listed as back on the job has since returned to his position, and HHS reportedly reinstated hundreds of NIOSH workers in May.

An HHS spokesperson told this news organization that the WTCHP continues to provide services and is actively “accepting, reviewing, and processing new enrollment applications and certification requests.”

Meanwhile, the Trump administration’s fiscal year 2026 budget proposal seeks to reduce CDC funding by $3.5 billion — approximately 40% — with a shift in focus toward infectious diseases. It remains unclear how the WTCHP will be affected by this new direction.

Mann said he is not involved in the program’s funding details but added, “Presumably, as long as some funding continues to keep the program alive, we will continue monitoring responders and providing free treatment until the very last World Trade Center responder passes.”

The study was partially funded through National Institutes of Health and CDC grants, the SUNY Research Foundation, and the CDC’s World Trade Center Health Program. Mann, Lowe, and West reported having no relevant financial relationships.

A version of this article first appeared on Medscape.com.

Mrs G.O. is an 80-year-old retired teacher who was widowed a decade ago. With no close relatives, she lives alone, accompanied by only two cats and a dog that she has rescued. “I am alone,” she told Gustavo Kusminsky, MD, consultant in Hematology and Hematopoietic Transplant Service at Austral University Hospital and lecturer in medicine at the Hospital Universitario Austral, Buenos Aires, Argentina. She said this calmly while refusing treatment for life-threatening multiple myeloma. “Doctor, I would rather not,” she added — her words lingering in the quiet consulting room. That moment is now the focus of a recent article in the journal Medicina.

In the article, Kusminsky described how he made an effort to clarify to the patient that she needed cancer treatment. He explained that the treatment was mostly oral, required no initial hospitalization, and that consultations could be spaced out. However, Mrs G.O. maintained her position.

“The patient had no signs of depression, and her argument was logical. Mrs G.O. was already receiving several medications for high blood pressure, was on anticoagulation therapy for atrial fibrillation, and managed dyslipidemia with fenofibrate. But she preferred not to receive treatment for her multiple myeloma.” Kusminsky noted.

“Doctor, I have lived my life. I am old. I am already taking too many medications. I do not have a family, and it would be very difficult to deal with the side effects and be dependent on the hospital. As long as I can take care of myself, I do not want any more treatment, at least not for now. We will talk in a few months if I am still here,” she told him before leaving.

The article mentioned that responses such as Mrs G.O. spark perplexity in modern medicine to the extent that clinicians initiate protocols to rule out depression or other psychological factors when a patient rejects treatments that could prolong their life. On the contrary, no such checks are made when patients agree to treatment, because acceptance is deemed “normal.”

Because of collective assumptions and the war metaphors often used in oncology, Mrs G.O. risked being labeled a “deserter from the battalion” of patients with cancer. 

In truth, her decision invites reflection on the doctor-patient relationship, respect for autonomy, and the benefits of modern cancer care offered today, Kusminsky said.

This provides an opportunity to consider the patient’s perspective rather than a purely medical perspective.

Jennifer Hincapié Sánchez, PhD, professor in the Faculty of Medicine at the National Autonomous University of Mexico (UNAM). She is the director of the UNAM University Bioethics Program and coordinates its Institutional Ethics and Bioethics Program for the Faculty of Medicine in Mexico. Although not involved in the article, she regards it as vital. “It’s crucial to remind medical staff that their role is to promote patients’ well-being and that this is related to the life plan that patients have set for themselves, even though this vision is sometimes not aligned with biomedical progress,” she said.

 

Patient Autonomy

Science-guided medicine aims to prolong life, improve quality, and relieve suffering. However, acceptance or refusal of treatment remains a personal choice for anyone with cancer.

Some evidence showed that patients who decline treatment do not always experience rapid decline. Many can live acceptable, even fulfilling, lives on their own for varying periods, even though they know that there is a possibility of shorter survival. Valuing fewer side effects and better quality of life. This suggested that quality of life is subjective and cannot be measured solely by biomedical standards but also by the meaning each person finds in their existence, even in the face of serious illness.

“There is a myth that quality of life is only valid when defined by objective success. Our task is to explain that it is subjective, and life can be meaningful despite limitations.” Kusminsky said.

Mrs G.O. knew her prognosis and treatment options but chose not to pursue treatment, which, while medically advisable, did not align with her values or vision of life.

Hincapié Sánchez stated that the priority is always to honor the patient’s choice. Clinicians must ensure that the patient has all necessary information that is always appropriate to their sociocultural context before making the decision.

“If the decision persists despite being informed and aware of the effects of the patient’s choice, all we can do is provide support, manage the pain, and seek the patient’s comfort,” she emphasized.

 

Medical Omnipotence 

Physicians should not view the refusal of treatment as an abandonment of the fundamental principles of the profession. Rather, it means respecting patient priorities and recognizing medicine as a dialogue between science and humanity, not as an exercise of control.

However, many clinicians struggle with such decisions because they conflict with their impulse to act and a sense of medical omnipotence. Hincapié Sánchez attributed these difficulties to medical training.

“We are taught to preserve life at all costs. If treatment even slightly prolongs life, many doctors continue to recommend it. The question becomes: Is it valid to extend life when its quality is in doubt?” she asked.

“Medicine is more than a science; it is an art. It is the most human in the sciences and the most scientific in the humanities. Let us not lose sight of the human element that allows us to see the patient as a person, not just a disease to be treated,” Hincapié Sánchez urges.

Kusminsky describes a common therapeutic obstinacy — doctors’ reluctance to stop “doing something,” to avoid “throwing in the towel,” or to uphold “hope is the last thing to be lost.”

“But physicians are growing more aware of these situations, and change is slowly coming,” he said. However, he added: “Of course, there is the issue of the perceived omnipotence of doctors — their words descending with authority to ‘prescribe’ treatment, issue ‘medical orders,’ or dictate ‘pharmacological’ therapy.

For the specialist, such terminology reflects a view of the doctor-patient relationship not as a mutual, two-way exchange, but as a vertical, paternalistic dynamic.

He suggested looking at ancient Greece for perspective. “Hippocrates, or rather the Hippocratic school, taught that the doctor-patient encounter is inherently one of compassion. We must approach this in that way. Reflecting on that bond, improving communication, humanizing relationships, and, above all, being available to listen are key,” Kusminsky said.

Another intersection that has long fascinated Kusminsky is between literature and medicine. This interest led him to explore the field of narrative medicine, serve on the board of directors of the Argentine Society of Narrative Medicine (SAMEN), and join the roster of speakers at the upcoming second SAMEN Conference in Buenos Aires on July 10 and 11, 2025.

“Narrative medicine uses storytelling tools to absorb, process, acknowledge, and empathize with patients’ illness narratives, aiming to restore humanism to practice,” he explained.

According to Kusminsky, the circumstances under which Mrs G.O. expressed her wish not to begin treatment immediately reminded him of a text by Melville’s famous “I would prefer not to” from Bartleby, the Scrivener.

This reflection inspired him to publish an article cited at its beginning. At the same time, it reinforced his belief that what patients say can itself be a form of narrative that extends beyond the confines of clinical history.

Mrs G.O. chose not to pursue treatment for multiple myeloma. However, she returned to Kusminsky’s office approximately 2 months ago. She felt well, and her disease slowly progressed; however, she still had no clinical signs or symptoms.

Kusminsky and Hincapié Sánchez have declared no relevant financial conflicts of interest.

This story was translated from Medscape’s Portuguese edition using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.

A version of this article first appeared on Medscape.com.

Mrs G.O. is an 80-year-old retired teacher who was widowed a decade ago. With no close relatives, she lives alone, accompanied by only two cats and a dog that she has rescued. “I am alone,” she told Gustavo Kusminsky, MD, consultant in Hematology and Hematopoietic Transplant Service at Austral University Hospital and lecturer in medicine at the Hospital Universitario Austral, Buenos Aires, Argentina. She said this calmly while refusing treatment for life-threatening multiple myeloma. “Doctor, I would rather not,” she added — her words lingering in the quiet consulting room. That moment is now the focus of a recent article in the journal Medicina.

In the article, Kusminsky described how he made an effort to clarify to the patient that she needed cancer treatment. He explained that the treatment was mostly oral, required no initial hospitalization, and that consultations could be spaced out. However, Mrs G.O. maintained her position.

“The patient had no signs of depression, and her argument was logical. Mrs G.O. was already receiving several medications for high blood pressure, was on anticoagulation therapy for atrial fibrillation, and managed dyslipidemia with fenofibrate. But she preferred not to receive treatment for her multiple myeloma.” Kusminsky noted.

“Doctor, I have lived my life. I am old. I am already taking too many medications. I do not have a family, and it would be very difficult to deal with the side effects and be dependent on the hospital. As long as I can take care of myself, I do not want any more treatment, at least not for now. We will talk in a few months if I am still here,” she told him before leaving.

The article mentioned that responses such as Mrs G.O. spark perplexity in modern medicine to the extent that clinicians initiate protocols to rule out depression or other psychological factors when a patient rejects treatments that could prolong their life. On the contrary, no such checks are made when patients agree to treatment, because acceptance is deemed “normal.”

Because of collective assumptions and the war metaphors often used in oncology, Mrs G.O. risked being labeled a “deserter from the battalion” of patients with cancer. 

In truth, her decision invites reflection on the doctor-patient relationship, respect for autonomy, and the benefits of modern cancer care offered today, Kusminsky said.

This provides an opportunity to consider the patient’s perspective rather than a purely medical perspective.

Jennifer Hincapié Sánchez, PhD, professor in the Faculty of Medicine at the National Autonomous University of Mexico (UNAM). She is the director of the UNAM University Bioethics Program and coordinates its Institutional Ethics and Bioethics Program for the Faculty of Medicine in Mexico. Although not involved in the article, she regards it as vital. “It’s crucial to remind medical staff that their role is to promote patients’ well-being and that this is related to the life plan that patients have set for themselves, even though this vision is sometimes not aligned with biomedical progress,” she said.

 

Patient Autonomy

Science-guided medicine aims to prolong life, improve quality, and relieve suffering. However, acceptance or refusal of treatment remains a personal choice for anyone with cancer.

Some evidence showed that patients who decline treatment do not always experience rapid decline. Many can live acceptable, even fulfilling, lives on their own for varying periods, even though they know that there is a possibility of shorter survival. Valuing fewer side effects and better quality of life. This suggested that quality of life is subjective and cannot be measured solely by biomedical standards but also by the meaning each person finds in their existence, even in the face of serious illness.

“There is a myth that quality of life is only valid when defined by objective success. Our task is to explain that it is subjective, and life can be meaningful despite limitations.” Kusminsky said.

Mrs G.O. knew her prognosis and treatment options but chose not to pursue treatment, which, while medically advisable, did not align with her values or vision of life.

Hincapié Sánchez stated that the priority is always to honor the patient’s choice. Clinicians must ensure that the patient has all necessary information that is always appropriate to their sociocultural context before making the decision.

“If the decision persists despite being informed and aware of the effects of the patient’s choice, all we can do is provide support, manage the pain, and seek the patient’s comfort,” she emphasized.

 

Medical Omnipotence 

Physicians should not view the refusal of treatment as an abandonment of the fundamental principles of the profession. Rather, it means respecting patient priorities and recognizing medicine as a dialogue between science and humanity, not as an exercise of control.

However, many clinicians struggle with such decisions because they conflict with their impulse to act and a sense of medical omnipotence. Hincapié Sánchez attributed these difficulties to medical training.

“We are taught to preserve life at all costs. If treatment even slightly prolongs life, many doctors continue to recommend it. The question becomes: Is it valid to extend life when its quality is in doubt?” she asked.

“Medicine is more than a science; it is an art. It is the most human in the sciences and the most scientific in the humanities. Let us not lose sight of the human element that allows us to see the patient as a person, not just a disease to be treated,” Hincapié Sánchez urges.

Kusminsky describes a common therapeutic obstinacy — doctors’ reluctance to stop “doing something,” to avoid “throwing in the towel,” or to uphold “hope is the last thing to be lost.”

“But physicians are growing more aware of these situations, and change is slowly coming,” he said. However, he added: “Of course, there is the issue of the perceived omnipotence of doctors — their words descending with authority to ‘prescribe’ treatment, issue ‘medical orders,’ or dictate ‘pharmacological’ therapy.

For the specialist, such terminology reflects a view of the doctor-patient relationship not as a mutual, two-way exchange, but as a vertical, paternalistic dynamic.

He suggested looking at ancient Greece for perspective. “Hippocrates, or rather the Hippocratic school, taught that the doctor-patient encounter is inherently one of compassion. We must approach this in that way. Reflecting on that bond, improving communication, humanizing relationships, and, above all, being available to listen are key,” Kusminsky said.

Another intersection that has long fascinated Kusminsky is between literature and medicine. This interest led him to explore the field of narrative medicine, serve on the board of directors of the Argentine Society of Narrative Medicine (SAMEN), and join the roster of speakers at the upcoming second SAMEN Conference in Buenos Aires on July 10 and 11, 2025.

“Narrative medicine uses storytelling tools to absorb, process, acknowledge, and empathize with patients’ illness narratives, aiming to restore humanism to practice,” he explained.

According to Kusminsky, the circumstances under which Mrs G.O. expressed her wish not to begin treatment immediately reminded him of a text by Melville’s famous “I would prefer not to” from Bartleby, the Scrivener.

This reflection inspired him to publish an article cited at its beginning. At the same time, it reinforced his belief that what patients say can itself be a form of narrative that extends beyond the confines of clinical history.

Mrs G.O. chose not to pursue treatment for multiple myeloma. However, she returned to Kusminsky’s office approximately 2 months ago. She felt well, and her disease slowly progressed; however, she still had no clinical signs or symptoms.

Kusminsky and Hincapié Sánchez have declared no relevant financial conflicts of interest.

This story was translated from Medscape’s Portuguese edition using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.

A version of this article first appeared on Medscape.com.

Mrs G.O. is an 80-year-old retired teacher who was widowed a decade ago. With no close relatives, she lives alone, accompanied by only two cats and a dog that she has rescued. “I am alone,” she told Gustavo Kusminsky, MD, consultant in Hematology and Hematopoietic Transplant Service at Austral University Hospital and lecturer in medicine at the Hospital Universitario Austral, Buenos Aires, Argentina. She said this calmly while refusing treatment for life-threatening multiple myeloma. “Doctor, I would rather not,” she added — her words lingering in the quiet consulting room. That moment is now the focus of a recent article in the journal Medicina.

In the article, Kusminsky described how he made an effort to clarify to the patient that she needed cancer treatment. He explained that the treatment was mostly oral, required no initial hospitalization, and that consultations could be spaced out. However, Mrs G.O. maintained her position.

“The patient had no signs of depression, and her argument was logical. Mrs G.O. was already receiving several medications for high blood pressure, was on anticoagulation therapy for atrial fibrillation, and managed dyslipidemia with fenofibrate. But she preferred not to receive treatment for her multiple myeloma.” Kusminsky noted.

“Doctor, I have lived my life. I am old. I am already taking too many medications. I do not have a family, and it would be very difficult to deal with the side effects and be dependent on the hospital. As long as I can take care of myself, I do not want any more treatment, at least not for now. We will talk in a few months if I am still here,” she told him before leaving.

The article mentioned that responses such as Mrs G.O. spark perplexity in modern medicine to the extent that clinicians initiate protocols to rule out depression or other psychological factors when a patient rejects treatments that could prolong their life. On the contrary, no such checks are made when patients agree to treatment, because acceptance is deemed “normal.”

Because of collective assumptions and the war metaphors often used in oncology, Mrs G.O. risked being labeled a “deserter from the battalion” of patients with cancer. 

In truth, her decision invites reflection on the doctor-patient relationship, respect for autonomy, and the benefits of modern cancer care offered today, Kusminsky said.

This provides an opportunity to consider the patient’s perspective rather than a purely medical perspective.

Jennifer Hincapié Sánchez, PhD, professor in the Faculty of Medicine at the National Autonomous University of Mexico (UNAM). She is the director of the UNAM University Bioethics Program and coordinates its Institutional Ethics and Bioethics Program for the Faculty of Medicine in Mexico. Although not involved in the article, she regards it as vital. “It’s crucial to remind medical staff that their role is to promote patients’ well-being and that this is related to the life plan that patients have set for themselves, even though this vision is sometimes not aligned with biomedical progress,” she said.

 

Patient Autonomy

Science-guided medicine aims to prolong life, improve quality, and relieve suffering. However, acceptance or refusal of treatment remains a personal choice for anyone with cancer.

Some evidence showed that patients who decline treatment do not always experience rapid decline. Many can live acceptable, even fulfilling, lives on their own for varying periods, even though they know that there is a possibility of shorter survival. Valuing fewer side effects and better quality of life. This suggested that quality of life is subjective and cannot be measured solely by biomedical standards but also by the meaning each person finds in their existence, even in the face of serious illness.

“There is a myth that quality of life is only valid when defined by objective success. Our task is to explain that it is subjective, and life can be meaningful despite limitations.” Kusminsky said.

Mrs G.O. knew her prognosis and treatment options but chose not to pursue treatment, which, while medically advisable, did not align with her values or vision of life.

Hincapié Sánchez stated that the priority is always to honor the patient’s choice. Clinicians must ensure that the patient has all necessary information that is always appropriate to their sociocultural context before making the decision.

“If the decision persists despite being informed and aware of the effects of the patient’s choice, all we can do is provide support, manage the pain, and seek the patient’s comfort,” she emphasized.

 

Medical Omnipotence 

Physicians should not view the refusal of treatment as an abandonment of the fundamental principles of the profession. Rather, it means respecting patient priorities and recognizing medicine as a dialogue between science and humanity, not as an exercise of control.

However, many clinicians struggle with such decisions because they conflict with their impulse to act and a sense of medical omnipotence. Hincapié Sánchez attributed these difficulties to medical training.

“We are taught to preserve life at all costs. If treatment even slightly prolongs life, many doctors continue to recommend it. The question becomes: Is it valid to extend life when its quality is in doubt?” she asked.

“Medicine is more than a science; it is an art. It is the most human in the sciences and the most scientific in the humanities. Let us not lose sight of the human element that allows us to see the patient as a person, not just a disease to be treated,” Hincapié Sánchez urges.

Kusminsky describes a common therapeutic obstinacy — doctors’ reluctance to stop “doing something,” to avoid “throwing in the towel,” or to uphold “hope is the last thing to be lost.”

“But physicians are growing more aware of these situations, and change is slowly coming,” he said. However, he added: “Of course, there is the issue of the perceived omnipotence of doctors — their words descending with authority to ‘prescribe’ treatment, issue ‘medical orders,’ or dictate ‘pharmacological’ therapy.

For the specialist, such terminology reflects a view of the doctor-patient relationship not as a mutual, two-way exchange, but as a vertical, paternalistic dynamic.

He suggested looking at ancient Greece for perspective. “Hippocrates, or rather the Hippocratic school, taught that the doctor-patient encounter is inherently one of compassion. We must approach this in that way. Reflecting on that bond, improving communication, humanizing relationships, and, above all, being available to listen are key,” Kusminsky said.

Another intersection that has long fascinated Kusminsky is between literature and medicine. This interest led him to explore the field of narrative medicine, serve on the board of directors of the Argentine Society of Narrative Medicine (SAMEN), and join the roster of speakers at the upcoming second SAMEN Conference in Buenos Aires on July 10 and 11, 2025.

“Narrative medicine uses storytelling tools to absorb, process, acknowledge, and empathize with patients’ illness narratives, aiming to restore humanism to practice,” he explained.

According to Kusminsky, the circumstances under which Mrs G.O. expressed her wish not to begin treatment immediately reminded him of a text by Melville’s famous “I would prefer not to” from Bartleby, the Scrivener.

This reflection inspired him to publish an article cited at its beginning. At the same time, it reinforced his belief that what patients say can itself be a form of narrative that extends beyond the confines of clinical history.

Mrs G.O. chose not to pursue treatment for multiple myeloma. However, she returned to Kusminsky’s office approximately 2 months ago. She felt well, and her disease slowly progressed; however, she still had no clinical signs or symptoms.

Kusminsky and Hincapié Sánchez have declared no relevant financial conflicts of interest.

This story was translated from Medscape’s Portuguese edition using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.

A version of this article first appeared on Medscape.com.

A treat-to target (T2T) strategy based on video capsule endoscopy (VCE) identified Crohn’s disease (CD) patients in clinical remission but with small bowel inflammation, resulting in fewer clinical flares versus a treat-by-symptoms standard approach.

“A VCE-guided treat-to-target strategy for patients with CD in remission confers superior clinical outcomes compared with continued standard care,” investigators led by Shomron Ben-Horin, MD, director of gastroenterology at Sheba Medical Center in Ramat-Gan, Israel.

Published in Gastroenterology, the CURE-CD (Comprehensive Individualized Proactive Therapy of Crohn’s Disease), a prospective, temporally blinded, randomized controled trial, looked at 60 adult patients with quiescent CD involving the small bowel (either L1 or L3 iof the terminal ileum and upper colon).

The researchers defined quiescent disease as corticosteroid-free clinical remission with a Crohn’s Disease Activity Index (CDAI) of <50 for the past 3 months on a stable regimen.

Patients ingested a VCE at baseline and those with a Lewis inflammatory score (LS) of ≥350 were designated high risk (n = 40) and randomized to either T2T optimization (n = 20) or continuing standard care (n = 20). 

T2T was optimized with repeat VCE results every 6 months. Patients with LS <350 (“low risk”) continued standard care. The primary outcome was the rate of disease exacerbation, demonstrated by a CDAI increase of >70 points and a score >150, or hospitalization/surgery, in high-risk standard care vs T2T groups at 24 months.

Treatment intensification in the high-risk group allocated to a proactive strategy comprised biologic dose escalation (n = 11 of 20), starting a biologic (n = 8 of 20), or swapping biologics (n = 1 of 20). 

The primary outcome, clinical flare by 24 months, occurred in 5 of 20 (25%) of high-risk treat-to-target patients vs 14 of 20 (70%) of the high-risk standard-care group (odds ratio [OR], .14; 95% confidence interval [CI], .04–.57, P = .006). 

Mucosal healing was significantly more common in the T2T group when determined by a cutoff LS < 350 (OR, 4.5, 95% CI, 1.7–17.4, nominal P value = .03), but not by the combined scores of total LS < 450 and highest-segment LS < 350. 

Among all patients continuing standard care (n = 40), baseline LS was numerically higher among relapsers vs nonrelapsers (450, 225–900 vs 225, 135–600, respectively, P = .07). 

As to safety, of 221 VCEs ingested, there was a single (.4%) temporary retention, which spontaneously resolved.

“VCE monitoring of CD was approved into government reimbursement in Israel last year, and I know several European countries are also considering the inclusion of this new indication for VCE in their payer reimbursement,” Ben-Horin told GI & Hepatology News. “Uptake in Israel is still baby-stepping. In our center it’s much more common to monitor T2T for small bowel patients, but this approach is still not widely applied.”

The authors cautioned that since the focus was the small bowel, the findings are not necessarily generalizable to patients with Crohn’s colitis.

The study was supported by the Leona M. & Harry B. Helmsley Charitable Trust, Medtronic (USA), AbbVie (Israel), and Takeda. The funders did not intervene in the design or interpretation of the study.

Ben-Horin reported advisory, consulting fees, research support, and/or stocks/options from several pharmaceutical firms. Several coauthors disclosed similar relations with private-sector companies.
 

A treat-to target (T2T) strategy based on video capsule endoscopy (VCE) identified Crohn’s disease (CD) patients in clinical remission but with small bowel inflammation, resulting in fewer clinical flares versus a treat-by-symptoms standard approach.

“A VCE-guided treat-to-target strategy for patients with CD in remission confers superior clinical outcomes compared with continued standard care,” investigators led by Shomron Ben-Horin, MD, director of gastroenterology at Sheba Medical Center in Ramat-Gan, Israel.

Published in Gastroenterology, the CURE-CD (Comprehensive Individualized Proactive Therapy of Crohn’s Disease), a prospective, temporally blinded, randomized controled trial, looked at 60 adult patients with quiescent CD involving the small bowel (either L1 or L3 iof the terminal ileum and upper colon).

The researchers defined quiescent disease as corticosteroid-free clinical remission with a Crohn’s Disease Activity Index (CDAI) of <50 for the past 3 months on a stable regimen.

Patients ingested a VCE at baseline and those with a Lewis inflammatory score (LS) of ≥350 were designated high risk (n = 40) and randomized to either T2T optimization (n = 20) or continuing standard care (n = 20). 

T2T was optimized with repeat VCE results every 6 months. Patients with LS <350 (“low risk”) continued standard care. The primary outcome was the rate of disease exacerbation, demonstrated by a CDAI increase of >70 points and a score >150, or hospitalization/surgery, in high-risk standard care vs T2T groups at 24 months.

Treatment intensification in the high-risk group allocated to a proactive strategy comprised biologic dose escalation (n = 11 of 20), starting a biologic (n = 8 of 20), or swapping biologics (n = 1 of 20). 

The primary outcome, clinical flare by 24 months, occurred in 5 of 20 (25%) of high-risk treat-to-target patients vs 14 of 20 (70%) of the high-risk standard-care group (odds ratio [OR], .14; 95% confidence interval [CI], .04–.57, P = .006). 

Mucosal healing was significantly more common in the T2T group when determined by a cutoff LS < 350 (OR, 4.5, 95% CI, 1.7–17.4, nominal P value = .03), but not by the combined scores of total LS < 450 and highest-segment LS < 350. 

Among all patients continuing standard care (n = 40), baseline LS was numerically higher among relapsers vs nonrelapsers (450, 225–900 vs 225, 135–600, respectively, P = .07). 

As to safety, of 221 VCEs ingested, there was a single (.4%) temporary retention, which spontaneously resolved.

“VCE monitoring of CD was approved into government reimbursement in Israel last year, and I know several European countries are also considering the inclusion of this new indication for VCE in their payer reimbursement,” Ben-Horin told GI & Hepatology News. “Uptake in Israel is still baby-stepping. In our center it’s much more common to monitor T2T for small bowel patients, but this approach is still not widely applied.”

The authors cautioned that since the focus was the small bowel, the findings are not necessarily generalizable to patients with Crohn’s colitis.

The study was supported by the Leona M. & Harry B. Helmsley Charitable Trust, Medtronic (USA), AbbVie (Israel), and Takeda. The funders did not intervene in the design or interpretation of the study.

Ben-Horin reported advisory, consulting fees, research support, and/or stocks/options from several pharmaceutical firms. Several coauthors disclosed similar relations with private-sector companies.
 

A treat-to target (T2T) strategy based on video capsule endoscopy (VCE) identified Crohn’s disease (CD) patients in clinical remission but with small bowel inflammation, resulting in fewer clinical flares versus a treat-by-symptoms standard approach.

“A VCE-guided treat-to-target strategy for patients with CD in remission confers superior clinical outcomes compared with continued standard care,” investigators led by Shomron Ben-Horin, MD, director of gastroenterology at Sheba Medical Center in Ramat-Gan, Israel.

Published in Gastroenterology, the CURE-CD (Comprehensive Individualized Proactive Therapy of Crohn’s Disease), a prospective, temporally blinded, randomized controled trial, looked at 60 adult patients with quiescent CD involving the small bowel (either L1 or L3 iof the terminal ileum and upper colon).

The researchers defined quiescent disease as corticosteroid-free clinical remission with a Crohn’s Disease Activity Index (CDAI) of <50 for the past 3 months on a stable regimen.

Patients ingested a VCE at baseline and those with a Lewis inflammatory score (LS) of ≥350 were designated high risk (n = 40) and randomized to either T2T optimization (n = 20) or continuing standard care (n = 20). 

T2T was optimized with repeat VCE results every 6 months. Patients with LS <350 (“low risk”) continued standard care. The primary outcome was the rate of disease exacerbation, demonstrated by a CDAI increase of >70 points and a score >150, or hospitalization/surgery, in high-risk standard care vs T2T groups at 24 months.

Treatment intensification in the high-risk group allocated to a proactive strategy comprised biologic dose escalation (n = 11 of 20), starting a biologic (n = 8 of 20), or swapping biologics (n = 1 of 20). 

The primary outcome, clinical flare by 24 months, occurred in 5 of 20 (25%) of high-risk treat-to-target patients vs 14 of 20 (70%) of the high-risk standard-care group (odds ratio [OR], .14; 95% confidence interval [CI], .04–.57, P = .006). 

Mucosal healing was significantly more common in the T2T group when determined by a cutoff LS < 350 (OR, 4.5, 95% CI, 1.7–17.4, nominal P value = .03), but not by the combined scores of total LS < 450 and highest-segment LS < 350. 

Among all patients continuing standard care (n = 40), baseline LS was numerically higher among relapsers vs nonrelapsers (450, 225–900 vs 225, 135–600, respectively, P = .07). 

As to safety, of 221 VCEs ingested, there was a single (.4%) temporary retention, which spontaneously resolved.

“VCE monitoring of CD was approved into government reimbursement in Israel last year, and I know several European countries are also considering the inclusion of this new indication for VCE in their payer reimbursement,” Ben-Horin told GI & Hepatology News. “Uptake in Israel is still baby-stepping. In our center it’s much more common to monitor T2T for small bowel patients, but this approach is still not widely applied.”

The authors cautioned that since the focus was the small bowel, the findings are not necessarily generalizable to patients with Crohn’s colitis.

The study was supported by the Leona M. & Harry B. Helmsley Charitable Trust, Medtronic (USA), AbbVie (Israel), and Takeda. The funders did not intervene in the design or interpretation of the study.

Ben-Horin reported advisory, consulting fees, research support, and/or stocks/options from several pharmaceutical firms. Several coauthors disclosed similar relations with private-sector companies.