I’ve found some books and websites that are almost certain to be helpful for caregivers and for those of us caring for ourselves, especially seniors. I found them after the account of my mother’s last week of life appeared in this magazine while I continued to try to prevent similar adverse medical events from happening to others.
It’s very regrettable that I didn’t know of these resources while I was Norma’s caregiver because much unforgettable trauma may have been avoided. You’re unlikely to have to endure such regret, if you make use of them.
is a national educational and research non-profit under guidance of the Empowered Patient Coalition. Engaged Patients consists of those of us who recognize the critical benefits of caregivers and patients being active, informed and respected members of healthcare teams.
Among the 12 resource areas are diagnostic process, hospitalization and patient journals. I made bittersweet use of its survey for reporting adverse medical events provided for those of us who didn’t find these resources in time to avoid them. Most of its resources are available to members only, but joining is both easy and free!
EMPOWERED PATIENT COALITION
is a national non-profit promoting patient rights and safety. It offers information regarding the importance and results of caregivers and patients becoming active, informed, respected members of healthcare teams. It gives caregivers and patients the critical role and voice we deserve in resolving issues that can result in adverse medical events and in reporting them if they’ve already occurred.
Both these organizations were begun by parents who lost children through adverse medical events. Sadly, website maintenance seems minimal because the administrator has had to return to full-time income-generating work. Yet all the powerful, wonderful resources are available!
Now for the books!…
I seemed somewhat obliged to read renowned surgeon Atul Gawande’s Being Mortal: Medicine and What Matters in the End because a quote from it heads the homepage of my PetEuthanasia.Info website. And I’m so pleased to have done so! He delivers an eloquent plea for a change of focus from length or quantity of life to quality of life during life endings. He uses accounts of life endings, including that of his father, to show how they can be ruined traumatically if either caregiver, doctor or patient are determined to prolong life at all costs, and allow that goal to control decisions.
Every Deep-Drawn Breath by Wes Ely, MD describes the astonishing revolution in Intensive Care that he and his co-workers initiated and have toiled at so persistently for decades! Because of their service, those of us who may experience Intensive Care are less likely to also experience any of the debilitating, yet unrecognized effects it’s had for many of its former patients.
I think it’s a revolution as critical to medicine as was the discovery of germs and antibiotics! I got the impression while reading his account that Dr. Ely is exceptionally empathetic, personable and responsible. The genuine and prompt replies to my emails from this professional who must be extremely busy indicate that this impression is valid! This book can provide a critical explanation for the disabilities and symptoms of some ICU veterans and a warning for the rest of us, as we all can become ICU patients.
To learn more online about this revolution, visit icudelirium.org.
Farewell: Michael J Riegert