A series of earlier posts looked at the issue of patients reading their medical records. The last entry suggested we look at the core problem. Which is: The electronic medical record (EMR) is designed to serve a variety of people -- and patients are not at the top of that list.
Thank you for your patience during this period of infrequent posts on Healthy Survivorship. And thank you to those of you who sent me emails and cards of support since reading When a Sister has Cancer. I'm happy to report that her recent scans document a dramatic response to the first three cycles of chemo.
The idea that caregivers need attention is nothing new. What's news is the launch of a formal training program for caregivers. The driving goal is not to develop caregivers' caregiving skills, but to help caregivers tend to their own welfare.
One Last Sale, a short story by critical-care nurse Judith Reishtein and published last year in Pulse: Voices from the Heart offers insights about patients' willpower and loved-ones' gifts to patients at the end of life.
Here's a topic people often avoid until forced to face it: How to Choose a Hospice. But, like learning the evacuation procedures on your flight, you don't want to begin learning about hospice when in the midst of a loved one's (or your own) health crisis.
Last month I was invited by Adele O'Reilly to offer some tips on survivorship for Freshbenies, a website devoted to helping patients navigate the medical system. Below are excerpts from her full post, titled, 5 Tips for Healthy Survivorship"
Clinical trials are designed to answer scientific questions about promising treatments that may prove to be ineffective and/or harmful. So a legitimate concern of patients is: “Can researchers really want what’s best for me?”
As promised in my May 24th post, here's my response to the argument that therapies of Phase I studies are given to learn about dosing--and not to help the patient, so they cannot be called "treatment."
Some clinicians think investigational therapies administered in Phase I trials should not be called "treatment." To explain why I believe those therapies can, indeed, be called treatment, let's first look at the general idea of treatment.
I posted on this blog only twice in April, the month before my May 6th keynote at MD Anderson. What made the topic--"Talking with Patients about Phase I Trials"--so challenging that it consumed all my writing hours for most of this year?
An article by Paula Span, A Decision Deferred, highlights an issue that needs to be a routine part of the decision to have a pacemaker implanted, as well as the follow-up care: When, if ever, will a patient want to turn it off?
I just returned from Japan, where I delivered two keynotes on supporting the children whose parent has cancer. The second event was sponsored by The Hope Tree, an organization named by founder Kaori Osawa, a social worker and cancer survivor, after the title of my second children's book.
Feelings of guilt can hamper Healthy Survivorship by interfering with your ability to get good care and/or live as fully as possible. But if your past actions may have -- or surely did -- play a role in your current ill health, what do you do about the guilt?