These books and websites provide tools and actionable advice about caregiving:
- Being Mortal by Atul Gawande, MD
Published by Metropolitan Books/Henry Holt and Co., New York, N.Y., $26 and available from Amazon, Village Books in Fairhaven, WA, and most bookstores.
A wide-ranging healthcare book that never the less brings everything together in a helpful way for elderly readers. The author explores the history and development of assisted living and nursing homes, and shines a bright light on the subject of gerontology and its place in care of the elderly. An excellent writer and long-time contributor to New Yorker magazine, Gawande’s book has garnished rave reviews from every reader I have spoken to about it.
- You Bet Your Life! by Trisha Torrey
Here’s a book I wish I could have written. Or barring that, I wish I had discovered it years ago. Its title says a lot about it: “You Bet Your Life! The 10 Mistakes Every Patient Makes” by Trisha Torrey. Read more…
- The Patient Advocate’s Handbook: 300 Questions And Answers To Help You Care For Your Loved One At The Hospital and At Home by James Thomas Williams, Panglossian Press, 2010
- The Not So Patient Advocate: How to Get the Health Care You Need Without Fear or Frustration by Ellen Menard, Bardolf & Company, 2009
- The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have A Life of Your Own by Gary Barg, Capital Books, 2003
- The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life by Ira Babcock, MD, Avery/Penguin, 2012
- September 2017 – Death Takes Death Café Founder by Robert A. Duke
Death at age 44 shocked acolytes of Briton Jon Underwood who died suddenly June 27, 2017, in London of brain hemorrhage from undiagnosed acute promyelocytic leukemia. Underwood founded Death Café to encourage people around the world to discuss, over tea and cake (coffee in the U.S.), life, the finality of life and why we fear it. Read article…
- September 2017 – What Government is Governing? by Robert A. Duke
Quest lab debacle raises question: If not to protect citizens from harm by fellow citizens, natural disasters or business interests, what is government for? In particular, what are the state’s attorney general’s office and the health department’s purpose if not to prevent harm or right wrongs? Read article…
- August 2017 – What Does Death Mean Today? by Robert A. Duke
“Modern Death: How Medicine Changed the End of Life,” by Haider Warraich, M.D., says modern technology and law have made death more complicated, so maybe you need to be more detailed about what procedures you want at the end of your life. Read article…
- July 2017 – “Lab Sale Sells Out Patients, Burdens Caregivers” by Robert A Duke
PeaceHealth sold its Whatcom and Skagit County medical labs to Quest Diagnostics of Madison, N.J., in March 2017. This greatly disadvantages Family Care Network (FCN) patients and caregivers, because Quest labs will only automatically share test results with PeaceHealth, not with other providers. Read article…
- June 2017 – “Outdated Healthcare Ignores Evidence” by Robert A. Duke
Algorithms Can Treat Physician Fallibility. Part 2.
I’ve learned by assembling the following information that the politically touted “best health care in the world” at primary and acute care levels is outdated and at least 10 to 20 years behind the times. And that’s a conservative estimate, based on my 2015 experience with the Desert Orthopedic Center (DOC) at the Eisenhower Medical Center in Rancho Mirage, California. There, I underwent cervical spine fusion surgery where a 3-ring binder was eventually filled with the paper trail of my diagnosis and treatment. It bulged with paper and followed me into what was touted as state-of-the-art surgery… Read article…
- May 2017 – Algorithms Can Treat Physician Fallibility by Robert A. Duke
Yes, physicians are fallible. They are human, just like you and me. And the intense pressure of their profession often flaws and distracts their thinking despite their best efforts to be clinical.In fact, half of all physicians are below average (and half are above average of course). Dr. Jan Poloniecki observed that “… even if all surgeons are equally good, half of them will have below average results; one will have the worst results and those results will be a long way below average,” according to the British Medical Journal. Read article…
- April 2017 – “Real Healthcare Reform Versos So-Called Reform: ‘ACA’ Et. Al.,” by Robert A Duke
“America’s health care system is neither healthy, caring, nor a system” Walter Cronkite said long ago. Right on Walter! Obama’s Affordable Care Act (ACA) has benefited 20 million previously uninsured persons, BUT repealing or replacing it will do little or nothing to improve the healthcare of hundreds of millions of Americans already receiving healthcare. Read article…
- December 2014 – “HIPAA: The High Cost of Privacy,” by Robert A Duke. What do moths and health information privacy have in common? Metamorphosis.The larval stage of health information privacy was the 1996 Healthcare Insurance Portability and Accountability Act (HIPAA). Today, HIPAA has morphed into a destructive pest that terrifies healthcare providers and impedes care and treatment of patients. Read article…
- October 2014 – “Patient Portal: A Magic Gateway to Healthcare Reform,” by Robert A Duke
Some famous portals include Alice’s rabbit hole to wonderland, the Chronicles of Narnia’s wardrobe, and Star Trek’s many black holes. A patient’s portal is an online door or window into your electronic medical records (EMR). Read article…
- September 2014 – “Death: Have It Your Way,” by Robert A. Duke
Conspicuous billboards would appear around Whatcom County reading, “DEATH: HAVE IT YOUR WAY,”* in the future of healthcare as visualized by July 2014’s Palliative Care Conference in Bellingham. That suggestion was greeted with applause… Read article…
- August 2014 – “Whatcom: Chronic & Acute Whatcom’s Beloved Healthcare Myth,” by Robert A. DukeThe name itself, Statewide Health Insurance Beneﬁts Advisor (SHIBA), sounds like a godsend to the sick and dying and their caregivers desperate to understand their health insurance. Read article…
- July 2014 – “Worse Than Cancer? Getting Needed Care, Says Local Author,” by Bob Schober
It started with a scream.In 2009, Shearlean Duke was on safari in Kenya with her husband, Robert Duke, when white-hot pain seared her leg and traveled up to her breast and arm. It soon abated, but she thought it was snakebite. It was much worse. Read more… (This article first appeared in Whatcom Watch in print monthly.)
Source of Authoritative, Useful Caregiving Advice
- United Hospital Fund is a New York-based non-profit health services research organization at www.uhfmyc.org.
It publishes newsletters, reports and presentations offering concise and practical advice to caregivers about dealing with many everyday issues confronting caregivers and patients anywhere in the U.S. healthcare system. Much of the information is how-to and do-it-yourself, and is a great resource for anyone actively involved in the care and treatment of a patient. For example there is “Family Caregivers Providing Complex Chronic Care to Their Spouses” and “Hospital Discharge Planning.” For the most part you can ignore the New York origin of this information because it pertinent throughout the nation.
- Orientation to Caregiving for Brain Tumor Patients
This is the closest publication I have found so far that can be considered a User’s Manual for any segment of healthcare. It is a practical guide that can benefit any patient or caregiver embarking on the journey of brain tumor care and treatment. First published in 2007 by the University of California, San Francisco, the handbook is now in its second edition and should be available at the Bellingham, Washington, PeaceHealth Cancer Center. In my own experience it took me 18 months to learn what is in this handbook, which I could have learned in just two or three hours of reading.It is too bad there are not similar handbooks for many other diseases to ease the burden of suddenly stricken patients and caregivers.
Available online or from your cancer treatment center.
- End-of-Life Care for Brain Tumor Patients: Manual for Health Care Providers
A 36-page manual addressing an audience of healthcare providers and definitely helpful for patients and caregivers. Most enlightening is the manual’s revelation of the deficit of end-of-life knowledge among providers of brain tumor treatment.
Authored by five University of California San Francisco doctors and nurses to assist healthcare providers, patients and caregivers to move toward the final stages of care for terminally ill patients. Available online or from your cancer treatment center.
- Transitions in Care for Patients with Brain Tumors: Palliative and Hospice Care
A 20-page handbook focused on effective care at home and at the end-of-life. Free and highly recommended.
Authored by University of California San Francisco medical, nursing and mental health professionals, to assist healthcare providers, patients and caregivers alike in moving toward the final stages of care for terminally ill patients. Available online or from your cancer treatment center.
- Whatcom Alliance for Health Advancement (WAHA)
Other Articles by and about Robert A. Duke: