Last week one of my family members was diagnosed with a serious illness.
My niece, a physician in San Francisco, recommended a book written by one of her colleagues: Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.
I immediately bought myself a copy, too. (If you’ve followed my blog, you know I’m an advocate of hospice, palliative care and end-of-life planning.)
The author, Steven Z. Pantilat, MD, is a palliative care specialist. Distilling years of experience—including those with his own family members—he has crafted an informative, compassionate and exceptionally useful guidebook.
Simply put, when we are diagnosed with a serious medical condition, we don’t have, or can’t digest, all the information we need. And we’re not at our best. We’re upset, scared, and feeling extremely vulnerable. Even though we’re reeling, our minds are blurred, and we don’t have all the facts, we have to move forward. We have to make decisions—critical decisions—on matters we don’t want to face and don’t feel equipped to make. We face a steep, daunting learning curve and don’t know where to start. Life After the Diagnosis tells you where to start and how to proceed.
Dr. Pantilat covers communicating more effectively with doctors; controlling common symptoms, such as pain and shortness of breath; managing expectations and dealing with roller coaster emotions; breaking the news to kids, friends and family members; finding caregivers and support groups; and making end-of-life plans.
Related post: What is a death doula?
But the overarching message of this book is a hopeful one: that you can have a life-limiting illness and still live with joy and purpose.
We can all live more mindfully
I’ve spent time with many patients and friends who knew they were dying. Some, tragically, lived in pain and fear until the end.
But others, once their confusion and fear passed, and a certain level of acceptance settled in, felt much more focused and in control of their lives. They finally understood what was most important to them—friends, family, travel, nature, music, writing, community service—and began to prioritize those activities. They let go of minor problems or grudges and instead spent their remaining time on positive, life-enhancing experiences.
I know I want to be part of the latter group!
Related post: A good death takes a community
Having life goals, no matter how short that life may be, also helps doctors deliver more personalized, appropriate care based on what you want and need, not what they think you want and need.
We could all benefit from such a mindset. How does the old saying go? Live life like there’s no tomorrow.
Do you have a friend or family member living with or recently diagnosed with a serious illness? Or someone who is a caregiver? Life After the Diagnosis would make a thoughtful gift.
I’m glad I’ve added it to my ever-growing resource library.
More of my favorite end-of-life books: