The C2S blog draws on the arts, the social and biological sciences to explore the many meanings of health and "dis-ease." Designed to be a locus where patients, their families and professionals can meet on a level playing field, it is the natural off-shoot of the Cell 2 Soul Online Journal. We encourage the submission of ideas, essays, poems, stories, humor, and timely reviews relating to the humanities and health care.
“There’s a growing concern that many of the terms we use [when labeling a tumor] don’t match our understanding of the biology of cancer.” Calling lesions cancer when they are not leads to unnecessary and harmful treatment, he said.
An April 15th NY Times article by Gina Kolata explains this paradigm shift well.
This is an important step; but there are many other tumors that likely fall into the same category. As practitioners and as patients when we receive a diagnosis of cancer, it behooves us to question the necessity of aggressive treatment for indolent tumors. Breast, prostate and a number of skin cancers quickly come to mind, but there will be many others. The study reported in JAMA Oncology hints that we have a ways to go and that we are in the infancy of this endeavor.
Ellen Rand writes us: "What’s the reality of caring for loved ones in decline? We’re not likely to see the rawness, the intimacy, the messiness, the profundity of it in the movies or on TV – except for a few rare pathfinders. David B. Oliver was one of them.
David and his wife, Debra Parker Oliver, possessed a deep knowledge gained over their professional lives researching and teaching about aging and end-of-life issues. That he responded to his own deadly illness in a meaningful way is tied both to his character and to his life’s work."
Ellen's beautifully written introduction to the Oliver's moving and instructive videos will interest many of you. We are grateful to her for having sent us her essay (which you can access here: Download Reality TV
Ellen Rand has been a journalist for more than 40 years, including five years as a housing columnist for The New York Times. She is a hospice volunteer with Holy Name Medical Center in Bergen County, New Jersey, a member of the Hospice Volunteer Association and the Association of Health Care Journalists. Her essays have appeared in several medical humanities publications, including Pulse—Voices from the Heart of Medicine; KevinMD; and Life Matters Media. She blogs athttp://lastcomforts.com. Ellen is the author of the recently published: Last Comforts: Notes from the Forefront of Late Life Care which has been called "a must read for caregivers, individuals with serious illnesses, their loved ones who care about their care and elected officials. A must read for caregivers, individuals with serious illnesses, their loved ones who care about their care and elected officials. "
As a patient, you have the right to read the notes your doctor or clinician writes about you during or after your appointment. Having the chance to read and discuss those notes with your doctor or family member can help you take better control of your health and health care.
As a healthcare professional, you may build better relationships with your patients and take better care of them when you share your visit notes.
OpenNotes is a national initiative working to give patients access to the visit notes written by their doctors, nurses, or other clinicians.
Evidence suggests that opening up visit notes to patients may make care more efficient, improve communication, and most importantly may help patients become more actively involved with their health and health care.
"Smart Patients is an online community for motivated patients and their families and friends. You can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life.
We believe patients are the most underutilized resource in healthcare. We've watched patients become experts in their conditions — and we see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same."
This is an interesting and valuable tool for motivated patients, care-givers and health care providers.
"Too often in medicine, you feel like part of a machine, a cog in a massive bureaucracy. We cover each other’s shifts, we maintain a hospital’s patient flow — and at the end of many days, you feel nothing would have been different if another doctor had stepped in.
But standardized care, by definition, is not personalized care: it fails to acknowledge patients’ individuality. [In this age of the electronic medical record, there are still things] only doctors — as humans — can offer: critical thinking, clinical intuition, empathic care, exploring what’s important to patients so they can make the decisions that are right for them."
Dhruv Khullar’s moving Op-Ed piece articulates this with clarity and eloquence.