Jessie Christine Gruman 1953-2014
Like many of you, we here at the Patient Voice Institute were so sad to learn of the loss of Jessie Gruman. Jessie, Founder of the Center for Advancing Health, died yesterday at home in New York. She’d long been sick, but somehow (probably because of her huge spirit) her death seemed impossible. Jessie was one of the most wise, smart and beloved people in the patient engagement/empowerment world (strike that– anywhere). She died because cancer found her again and again, and it finally won. I heard Jessie speak at a conference a few years ago, and if you’ve ever had the pleasure, or even better, to know her personally, you know what presence and grace she had. Reading her work, I found this grace alive in her human journey, her insights for the health care industry, her wisdom about the full experience of being a patient, and her choice to stay focused on the good she could do for others with what precious time she had. Our hearts go out to Jessie’s family and friends.
Below are snippets of wisdom Jessie shared over the years with Consumer Reports and Consumer Reports Health. If you read nothing else, read the advice at the end, “A Friend in Need”. Think of Jessie when you use it.
Nov 2012 “8 steps to surgical recovery”
Plan your discharge
Jessie Gruman, Ph.D., has had so many life-threatening illnesses and major surgeries that she founded the Center for Advancing Health, a Washington, D.C-based nonprofit organization dedicated to helping patients “find good health care and make the most of it.” But despite her savvy, she was practically pushed out the door of a world-famous hospital after a one-week stay for her most recent operation, which was for stomach cancer.
“I was standing in my underpants untangling my phone charger,” she says, “and a nurse walked in and said, ‘We’ve got your discharge orders. Here’s a prescription for painkillers. Do you want a flu shot?’ That was my discharge plan.”
Mar 2011 “Doctor-patient” story / Physicians take the long viewDoctors said that forming a long-term relationship with a primary-care physician is the most important thing a patient can do to obtain better medical care, with 76 percent saying it would help “very much.”
“That continuity is really undervalued,” said JessieGruman, Ph.D., president of the Center for Advancing Health, a patient-advocacy group in Washington, D.C.Gruman said that because of a health history that included three separate bouts of cancer, her longtime primary-care doctor urged her to tell him promptly about any new symptom, no matter how minor, that lasted more than two days.
“I hate the idea that my health is fragile,” she said. “He was able to capture my imagination and get me to act in a way that was consistent with my interests.” When new symptoms appeared, Gruman told her doctor. Four days later, she was diagnosed with stomach cancer.
Research seems to back up Gruman’s experience. It suggests that patients who frequently switch doctors have more health problems and spend more on care than patients who have a consistent relationship with a single physician.
CR March 2011 “Finding Dr. Right” section.
Elsewhere in this issue you’ll find Consumer Reports’ popular Ratings of several automobiles. But you won’t find such detailed quality data on individual doctors here, or anywhere else, because we don’t think anyone has figured out how to accurately measure the quality of care that they deliver. Yet 31 percent of the patients we polled wished that they had more information before choosing a doctor.Sure, you can find your way to websites with basic information such as a doctor’s medical school and board certification, and whether the practice is accepting new patients. But none of that information has much to do with a doctor’s quality, according to a study published in the Sept. 13, 2010, issue of Archives of Internal Medicine.The health-reform law called for a public website, Physician Compare ( www.medicare.gov/find-a-doctor), that will include information on physician quality, including patient outcomes, continuity, and coordination of care, efficiency, and safety. But the full site won’t make its appearance until around 2015 at the earliest.Until then, use these tried-and-true strategies to find a doctor:Ask people. Doctors we surveyed ranked getting a recommendation from family or friends as the most valuable method for choosing a physician. Next came referrals from other doctors.Ask questions. The more that patients we surveyed knew about their doctors, the more satisfied they were. That held true for factual information, such as hospital affiliation and office hours, and especially for more qualitative information such as the doctor’s personality and professional style.Audition the doctor. Use your first appointment as an audition. If you have a specific health condition, ask how much experience that doctor has with it. And be open about other concerns you have.”It’s a little bit like dating,” said Jessie Gruman, Ph.D., a patient advocate. “You really want this person to be responsive to a range of things, not just one aspect of your health.”
Break up if it isn’t working. “Your doctor is a service provider,” Gruman said. “You wouldn’t have a plumber back who was disrespectful to you or left a mess.”
Reasons to dump your doctor might include a bad bedside manner, inability to communicate openly with you, an appointment calendar that’s always full or disorganized, an unhelpful staff, or a perpetually backed-up waiting room.
Talk to your doctor about your concerns, and if nothing changes, consider finding another physician. Don’t forget to have your medical records transferred.
April 2007 One Minute Consult “A friend in need”
With Jessie Gruman, Ph.D., president of the Center for the Advancement of Health in Washington, D.C., and author of “AfterShock: What to Do When the Doctor Gives You – or Someone You Love – a Devastating Diagnosis” (Walker & Co., 2007).
WHAT’S THE BEST THING TO DO IF FRIENDS GET TERRIBLE MEDICAL NEWS?
You should touch base and let them know you are thinking of them, that you would like to help them if you can, and for them to call you if they would like. You need to do this in a way that does not create any obligation to respond to you or care for you. Respect the fact that their illness is going to require all of their attention, so they may not have time to reciprocate your friendship as they usually would. Your actions should be aimed at supporting the dignity, autonomy, and privacy of your friends.
WHAT THINGS SHOULD YOU NOT SAY?
I have had cancer three times, plus a life-threatening heart infection, and I interviewed 200 patients for this book. Everybody mentions hearing certain responses that may have been well-intentioned but were somewhat upsetting. When you tell people that you are sure that everything will be fine, they may think you are minimizing the seriousness of the problem. Stories about people who had a similar disease but who are now dead are obviously discouraging and frightening. Don’t tell people their illness is a blessing in disguise. It may actually turn out that way, but, especially early on, they probably can’t imagine it’s anything but a disaster.
WHAT ABOUT PRACTICAL THINGS LIKE A MEAL OR A DRIVE TO THE DOCTOR?
It is helpful to make concrete offers: “I would like to bring dinner to your family next week; what day would be good for you?” Or “I’m available Saturday to do chores and drive your kids around.” But never offer to help if you can’t deliver on it, and don’t be offended if they turn you down. Many people designate a family member as a gatekeeper because they are too ill or upset to maintain their social relationships themselves. This is something you should respect. If you are asked to go to somebody’s doctor appointment, you need to talk beforehand about not only what your role is going to be, but also what information you can share with others.
RIP Jessie <3
