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Showing posts with label Barriers. Show all posts
Showing posts with label Barriers. Show all posts

Wednesday, August 14, 2013

Charting Death: Radio Host Breaks Old Barriers

Radio host Scott Simon never intended to tweet his mother's final hours to 1.2 million followers, but her dying moments were among the most emotional in his public life.

"I have covered 10 wars and been around the world," Simon told ABCNews.com. "But I am telling you, the 48 hours we stayed up together was one of the most exhilarating in my life. And she was also, for the benefit of her family, giving a really great performance, and no less sincere, rallying herself to be strong to relieve our anxieties."

For the past two weeks, Simon, of NPR's "Saturday Weekend Edition," has been tweeting about the looming death of his 84-year-old mother, a former "show girl" who died just short of her 85th birthday in Chicago of undetermined causes.

His tweets -- beginning July 16 when he learned about her emergency surgery to her death July 29 -- resonated around the world and drew praise from those who had similarly experienced the death of a loved one.

From the ICU at Northwestern University Memorial Hospital, he tweeted until the "Heart rate dropping. Heart dropping" moment, sharing his 140-character view of life's final journey.

Simon, 61, told ABCNews.com that he hadn't intended to tweet about his mother's death during the many monotonous moments in the ICU.

"I didn't expect it to be my mother's death bed," he said through tears. "It wasn't my frame of mind. I felt it could be the end, but I had one big reason to fight like a lion for her. ...I am her son and we were going to beat this together.

"I don't want people thinking I was holding my mother in my arms and tweeting. [As in] war, there are often seconds of panic and anxiety and terror between hours of tedium."

As Simon put it so emotionally over Twitter: "The heavens over Chicago have opened up and Patricia Lyons Simon Newman has stepped on stage."

Ethicists have taken note.

"This is the tip of a very big iceberg shift in thinking about privacy and intimate moments, when someone that prominent does that," said Art Caplan, director of medical ethics at NYU Langone Medical Center.

Parents suffer wrongful deaths in assisted living.

"It's not that he should or shouldn't do it; that's for him to decide and discuss with his mom and other relatives," he said. "But it's clear to me that one of the last places -- sex, birthing and dying -- are not off limits anymore. There aren't many spheres left, and that's a really notable shift."

Simon said his mother may not have understood what Twitter was, but she told her son after learning of the millions around the world who had tweeted him in support, "How very nice of them."

He said he was not grieving until the end. "Not only had we kept hoping, we did until her last breath," he said.

Simon described holding his mother's hand: "Haven't held it like this since I was 9." And shares her pain: "Will this go on forever?"

He jokes about one of the "great little things in life" is flossing her teeth. Then he tears up when his mother reacts to the birth of the royal baby.

"She had so many flabbergastingly insightful and funny things to say: 'Look baby, I tell you all great death-bed speeches are written in advance.' She was hilarious."

Newman had been a model -- the Jon James hair spray girl -- and did television commericals. Simon said he got his own in the public eye appearing with her in an advertisement for Archway cookies when he was about 8.

"She had lied about her age to work nightclubs to work at 16," he said. "My dad, Ernie Simon, was a comedian."

And one of the last goodbyes: "Mother cries Help Me at 2:30. Been holding her like a baby since. She's asleep now. All I can do is hold on to her."

Simon also tweets about the difficulty of delivering the sad news to his daughters Elise, 10, and Lina, 6: "Worst: telling our daughters. Oldest was flinty, youngest sobbed."

Easing the fear of death by writing suicide notes.

Meanwhile, Simon's heartfelt messages have gone viral, encouraging strangers to respond and share in his grief.

One follower, Steve McLaughlin, tweeted, "I haven't held my mother's hand in a long time, thank you for reminding me that time is fleeting and that I need to do that."

Other public figures have shared similar moments, but not in real time on the Internet. In 2004, the photographer Annie Leibovitz documented the death of her partner, writer Susan Sontag. Her son later called the photos, "carnival images of celebrity death."

"Social media has changed the way many people do lots of things," said Dr. Stuart Youngner, the Bioethics Department chairman at Case Western Reserve University School of Medicine in Cleveland. "Why not grieving? Scott Simon is a public figure and may well find that pubic expression of what many consider private feelings is helpful to him."

"After all," he adds. "Eric Clapton wrote a song about his young son who fell and died from an open window."

Philadelphia psychologist Ann Rosen Spector agrees that social media are "just a fact of life now."

But when it comes to grieving, sharing can be helpful, "as long as people don't feel pressured into doing it," she said. "Some people share every time they buy a new pair of shoes or sneeze or cough. Some people share medical updates. It's a whole new world. There is not a standard of care to grieve."

Kenneth Doka, a senior consultant to the Hospice Foundation of America and author of "Beyond Kubler-Ross: New Perspectives on Death, Dying and Grief," calls the support system that Twitter created around Simon "an incredible phenomenon."

But he said he was "curious" why Simon's mother was in so much pain, given scientific and medical advances in hospice care. "I wondered if we did all we could for this woman in pain," said Doka, who's also a professor of gerontology at the Graduate School of The College of New Rochelle in New York.

Simon said his mother had received morphine for her pain in the end. "Those people were ICU heroes," he said. "I am grateful to them and my family owes then a permanent debt."

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Thursday, May 30, 2013

Data Addressing Patient And Physician Barriers To Clinical Trials To Be Presented By Experts

Main Category: Cancer / Oncology
Also Included In: Clinical Trials / Drug Trials
Article Date: 17 May 2013 - 1:00 PDT Current ratings for:
Data Addressing Patient And Physician Barriers To Clinical Trials To Be Presented By Experts
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Researchers from University Hospitals Case Medical Center's (UHCMC) Seidman Cancer Center in Cleveland, OH, will present findings from two studies evaluating new technologies designed to address common barriers to patient enrollment in clinical trials. Results from a large-scale, randomized trial demonstrated that the use of tailored, web-based videos delivering educational information to patients before an oncologist visit can significantly improve knowledge and reduce attitudinal barriers that impact enrollment in clinical trials. A second, preliminary study showed that a new automated technology created by UHCMC researchers helped oncologists identify clinical trials for individual patients in a busy outpatient oncology clinic.

"Although clinical trials are the key to developing new, better cancer treatments, less than 10 percent of cancer patients participate in them," says Neal J. Meropol, MD, study author, Chief of the Division of Hematology and Oncology at UHCMC and Case Western Reserve University School of Medicine and member-elect of the ASCO Board of Directors. "We know there are multiple barriers to clinical trials for both patients and oncologists, and the new technologies being evaluated at University Hospitals Case Medical Center Seidman Cancer Center are designed to break down those obstacles by providing individualized education for patients and new technology to help oncologists efficiently identify appropriate trials for their patients."

Common barriers to patient enrollment in clinical trials include fear of side effects, receiving placebo instead of treatment, financial concerns and the misperception that clinical trials should only be considered as a "last resort" option. For oncologists, a common obstacle is the time needed to help identify appropriate clinical trials - thousands of which are currently in progress across the country - for their patients. At the UHCMC Seidman Cancer Center, there are currently more than 300 ongoing clinical trials focused on cancer.

About the Studies

Oral Abstract Session: Health Services Research
Randomized Trial of a Web-based Intervention to Address Barriers to Clinical Trials

Abstract #6500: June 3, 8:00 - 8:15 a.m.

Dr. Meropol will present findings from a trial examining the use of PRE-ACT - Preparatory Education About Clinical Trials - a tailored, interactive, web-based intervention to address patient barriers and improve preparation for consideration of clinical trials as a treatment option. The prospective, randomized, multicenter, Phase 3 clinical trial evaluated 1,255 patients and utilized baseline assessments to determine their top clinical trial barriers. Patients in the PRE-ACT group were presented with a video library of 30-90 second clips that addressed their individual barriers, as indicated by their assessment results. Patients in the control group received online, text-based information that wasn't tailored to their individual barriers. A follow-up survey was conducted to reassess patient knowledge and attitudes.

Results showed that PRE-ACT significantly improved patient understanding and attitudes towards clinical trials when viewed before a visit to an oncologist. The control group also had improved knowledge, reduced attitudinal barriers and improved preparation, but the PRE-ACT group was more satisfied with the amount and format of information presented to them and felt more prepared to consider enrollment in clinical trials when compared to patients who received written information.

Funding for this study was provided by a National Cancer Institute (NCI) grant (R01CA127655) to Case Western Reserve University School of Medicine.

General Poster Session: Health Services Research
Trial Prospector: An Automated Clinical Trials Eligibility Matching Program

Abstract #111482: June 3, 1:15 - 5:00 p.m.

Co-authors Andrew Parchman, MD, Hematology and Oncology Fellow at UHCMC, and Dr. Meropol will present findings examining the use of Trial Prospector - an automated, HIPAA-compliant program pioneered by UHCMC that matches patients to clinical trials based on information extracted from their electronic medical records. Its user-friendly interface allows for physician perusal of relevant clinical trials and eligibility checklists at the point of care without requiring manual data entry. For this study, pilot testing was performed in a GI oncology subspecialty clinic. Eleven oncologists completed surveys after each patient visit to assess the usability and impact of Trial Prospector.

Results showed that the Trial Prospector matching algorithm was 100 percent accurate and saved time identifying potential clinical trials. Physicians generally found it to be easy to use, and 90.9 percent said they would recommend its use for clinical trial eligibility screening. Based on these preliminary findings, Dr. Parchman and team intend to expand data elements to increase the precision of trial matching and expand to other disease specialties and practice locations.

Funding for this study was provided by the Clinical and Translational Science Collaborative of Cleveland, UL1TR000439 from the National Center for Advancing Translational Sciences (NCATS) component of the National Institutes of Health and NIH roadmap for Medical Research to Case Western Reserve University School of Medicine.

Article adapted by Medical News Today from original press release. Click 'references' tab above for source.
Visit our cancer / oncology section for the latest news on this subject. ASCO Annual Meeting: May 31-June 4, 2013 | McCormick Place | Chicago, Illinois
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