Cancer: The Ugly Breakdown
July 18, 2019 – Jermaine Fenwick
A Decade of Cancer Survivorship: What Helped Me Through It
July 17, 2019 – Judy Kirchmeier
Finding My Way
July 16, 2019 – Carol Derewitz
My Decision to Have a Double Mastectomy Without Reconstruction
July 12, 2019 – Myrna Chandler Goldstein
God Carried Us Through My Son's Battle with Testicular Cancer
July 11, 2019 – Jessica Stringer
Say Something: What to Do and Say When a Loved One Has Cancer
July 10, 2019 – Lori Luedtke
'Ole Blue Eyes' and MRIs: Music Soothes Pain During Cancer Treatments
July 09, 2019 – Trisha Ready
Making 'Me-Time' A Reality
July 03, 2019 – Lori Luedtke
Cancer: It's Never An Easy Journey
July 02, 2019 – Carly Flumer
Life Is for Living
June 28, 2019 – Lori Luedtke

When Clinical Trials Try Patients' Patience

Treating people with cancer requires the coordination of complex care, and adding a clinical trial to the mix can pose more challenges. 
BY Ellen Miller-Sonet
PUBLISHED November 01, 2018
I recently had the privilege of listening to several patients and their care partners discussing their experience with clinical trials.  What I heard from these patients, who are being treated at some of the most prestigious New York cancer centers, was really troubling. Horrific, in fact.

One middle aged woman with advanced cervical cancer told of begging her physician to put her on a specific trial for which she was clearly qualified. She firmly believed that investigational therapies would provide better chances for control of her cancer. The oncologist denied her access even though the trial was being offered at her institution.  After six months of ineffective chemotherapy and atrocious quality of life including unremitting nausea and vomiting, her oncologist finally agreed to transfer her care to another oncologist, who was the trial investigator.  Why she was initially denied access to the trial was never explained though it may have been related to the logistical and bureaucratic hurdles associated with changing doctors.  Why she had to suffer so needlessly was never explained either.

Another panelist recounted an equally tragic story.  At age 64, he was diagnosed with multiple myeloma and had already suffered numerous spine fractures that were excruciatingly painful.   He eagerly agreed to be on a clinical trial, and received a treatment that was already known to be effective as a second line therapy.  Sadly, since his care plan was managed largely by the research nurse, he didn’t get the clinical care he so desperately needed to relieve his debilitating symptoms and side effects.  In one year, he visited the ER 8 times, waiting from 7 to 44 hours for medical attention. Through a lack of coordinated care, this patient suffered horribly and needlessly.  Because of his compromised mobility, the transportation challenges to treatment were sometimes insurmountable. Between endless phone calls to disparate, inattentive clinicians and her husband’s declining quality of life, his wife also became distraught and frantic. 

I hope these anecdotes are outliers.  When patients and care partners face challenges like this however, they should voice their concerns as soon as possible to the hospital patient representative or advocate, Director of Nursing, or Chief Medical Officer.  

Treating people with cancer requires the coordination of complex care, and adding a clinical trial to the mix can pose more challenges. Meeting patients’ clinical, emotional and logistical needs however, is fundamental to delivering the high quality of care that patients and families are promised, pay for and deserve.  Many of us are avid supporters of research that yield more effective treatments, and we’re grateful to the patients who volunteer for clinical trials.  Penalizing them with inattentive and inadequate care will surely jeopardize patient willingness to participate in research.  As it should. 

Ellen Miller-Sonet is the Chief Strategy and Alliance Officer at CancerCare, the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. 
Continue the conversation on CURE’s forum. >>
Talk about this article with other patients, caregivers, and advocates in the Anal cancer CURE discussion group.

Related Articles

$articleRelated$
×

Sign In

Not a member? Sign up now!
×

Sign Up

Are you a member? Please Log In