Receiving bad health news sparks great personal upheaval. Some people rage against the unfairness and some wither from sadness. Some people lose their faith, others find it. Some are torn between their fear of pain and their fear of death. Families are wracked by the threat of loss. It is a time when nothing is certain and the future looks dark.
And in the midst of this anguish, each one of us, irrespective of diagnosis — HIV/AIDS, cancer, Alzheimer's disease, ALS, multiple sclerosis, macular degeneration — will by necessity undertake a number of tasks to care for ourselves that we have probably never done before but that can have an important impact on the lives of everyone involved. We will:
- Respond to the shock
- Learn about the condition and its treatments
- Decide whether to involve others
- Find the right doctors and hospitals
- Get timely medical appointments
- Seek other opinions about what is wrong and what to do about it
- Manage our work lives
- Pay for care
- Find relief
- Take the next steps
This book provides practical guidance about how you and your loved ones might approach these tasks while you are in shock about your diagnosis and uncertain about how to respond to it.
It summarizes what research has discovered about each of these tasks. It features interviews with scores of people from all walks of life who have taken on these tasks — as patients, as family members and as friends. It includes interviews with professionals who are involved with people just after they are diagnosed: doctors, nurses, clergy, social workers, psychiatrists, psychologists, as well as insurance administrators, clinic staff, and employers.
I wrote this book in the hope that this information, these insights, and these experiences will provide its readers with a sense of their choices without making them feel overwhelmed by what they must learn and do.
Patient Engagement Is Here to Stay
January 15, 2015
Jessie Gruman founded the Center for Advancing Health in 1992 and served as president until her death in 2014. After over 20 years under her remarkable leadership, CFAH ended operations in December 2014. This post was Jessie's final essay announcing the release of CFAH’s last patient engagement research report and sharing some personal reflections on her career...
Patient Engagement: Here to Stay
July 1, 2014
What is patient engagement and what does it take to accomplish? With the support of the Robert Wood Johnson Foundation, CFAH set out to explore this concept as it was viewed by various diverse stakeholders. Our interviews with 35 key health care stakeholders lead to an impressive unity of opinion...
All You Do Is Complain About Health Care
June 25, 2014
"All your Prepared Patient essays do is complain about your health care and your doctors. That's why I don't read them." Yowzah! Do I really complain? Not to be defensive, but I don't think so. Every week I work to vividly describe insights that might shine a little light on this project that patients, caregivers, clinicians and policymakers – well, the list goes on – share of trying to make health care more effective and fair...
Don't Let the Sun Shine Down on Me (It's Too Complicated!)
June 18, 2014
I'm impressed by how much we struggle with seemingly simple health decisions when faced with sorting through too much information. Every week we view diverse arrays of products with health, convenience and cosmetic claims competing for our attention. Think yogurt, Gatorade, running shoes, breakfast cereal...Given the ubiquity of such products and the swirl of marketing and science- or non-science-based information surrounding each, I'm wondering three things...
Don't Forget the Hefty Price We Pay to Engage in Health
June 12, 2014
Media-fueled flip-flops and research breakthroughs on lifestyle and health behaviors are wearing down my usual patience with the provisional nature of science. Even simple dietary recommendations like lower fat/salt recommendations have become complicated as old truisms are overturned by new evidence. So I'm asking: To whom should I turn for meaningful guidance about modifying my risk for illness and boosting my health?