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This is a book about what you must do to take care of yourself while your heart is breaking.
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.
How Easily We Can Misinterpret the Benefits of Patient-Centered Innovation!
May 8, 2013
Here's the bad news: We will not benefit from the health care services, drugs, tests and procedures available to us unless we pay attention, learn about our choices, interact with our clinicians and follow through on the plans we make together.
The "True Grit"-tiness of Sharing Health Care Decisions with Our Doctors
May 1, 2013
In the Coen brothers remake of the 1969 movie True Grit, Mattie Ross, an intrepid 14-year-old, is determined to hunt down and kill the man who murdered her father. To accomplish this, she hires U.S. Marshal Rooster Cogburn, (played by a mumbling Jeff Bridges) a rough, one-eyed veteran of many such quests then announces that she plans to come along. She figures she is prepared.
Bad Language: Words One Patient Won't Use (and Hopes You Won't Either)
April 24, 2013
When I read Trudy Lieberman’s post yesterday, I was reminded that the highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.
Whose Patient Engagement Goals Are We Talking About?
April 17, 2013
What we look for when we participate actively in our health care differs from what our clinicians, employers and health plans believe will result when we shift from being passive to active participants. We don't have the same goals in mind. Does this matter?
Has Patient Engagement Stalled?
April 10, 2013
A few discouraging reports on patient engagement have skittered across my desk in the past few weeks. What's going on? Why are so many of us so slow to engage in our care when it is increasingly clear that we will do better if we participate more fully? Here's what I suspect...
