Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”
Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.
I have cancer that is incurable, aggressive, and has negligible survival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.
Complications from my cancer sent me to the hospital again recently. The news that I was in trouble came unexpectedly from my oncologist’s office Thanksgiving eve, following a routine blood test. “Your liver numbers are out of whack.” My response was “Really?” as if I’d been notified that my driver’s license had expired.
I was diagnosed with a blocked bile duct and I missed the turkey and cranberry sauce. My oncologist called in a gastroenterologist, who scheduled a procedure to open the blocked duct. But my tissues were too distorted to complete the procedure, so the next day an interventional radiologist inserted a bile drain. I met him seconds before I drifted into sedation. When it was over and I was awakening, he offered me a cheery “good luck” as I rolled out the door. I never saw him again.
We hear inspiring things about patient engagement. The very concept has a hearty, spirited, “do-right” sound to it.
I spent many years in human resources. I remember the conversations we had around employee engagement as we searched for a practical approach. We realized that it is the employees’ belief that the company is moving in the right direction; that the work they do is meaningful and that they are committed to it; that the trust index of respect, credibility and fairness is high; and that employees are willing to work hard to help it get there.
I’ve come to believe that seriously sick people are often subject to some very interesting comments from well-intentioned non-sick people. They are frequently inspired by #platitudes from self-help-books, Google chat rooms (heaven forbid), or beliefs that have been around for so long that they are a natural part of common discourse.
To be fair, when we are confronted with the uncomfortable task of talking to a sick person, our conversation can easily become a pre-programmed response that make us feel better for having said something uplifting, positive, sympathetic, or socially acceptable. It’s antiphonal, like the “god bless you” after someone sneezes..
Posted 7/16/12 on Medscape Connect’s Care and Cost
The news of my wife Elaine’s primary peritoneal cancer 27 months ago began a fevered effort to learn all we could about her disease and our options. Peritoneal cancer, which is close in form and behavior to ovarian, is rooted in the abdominal lining. “Gold standard” treatments notwithstanding, the prognosis isn’t good. After a 12-36 month remission in which tumors are inactive, the disease generally returns, and a high percentage of women are gone within 5 years of diagnosis.
Cancer elicits a primal fear that can provoke fantasy and baseless speculation. Cancer patients in remission have told us they are cured. Others, well-meaning, have announced they know someone with “exactly what you have,” and that theirs went away by applying a strict dietary or spiritual discipline.
The long-term success of N-of-One, a Waltham Mass.-based company offering personalized cancer information, will undoubtedly be shaped by the vision of its newly appointed CEO, Christine Cournoyer, and strategic partnerships with companies like Foundation Medicine, announced this week.
But ultimately it comes down to whether the company’s original direct-to-patient strategy works for cancer patients like Elaine Waples.
In the fall of 2010, Atul Gawande, surgeon at Brigham and Women’s Hospital in Boston and an associate professor at Harvard Medical School, delivered a touching speech at the October New Yorker Festival. My husband attended with a friend and, because he said it so profoundly impacted the audience, I watched it myself on video the next day. It was indeed amazing. Dr. Gawande, author and national health care presence, spoke unabashedly about his lack of skill in conducting end-of-life conversations with his patients.