Archive for the ‘Medicine’ category

Engage With Grace

November 27th, 2008
The One Slide

The One Slide

Several dozen bloggers in the health care field and beyond are today engaged in a blog rally*, simultaneously posting the item below to encourage conversation about a topic that’s often avoided but needs to be addressed in every family: How we want to die. I’ve written about this before, with regard to my mother. Please try it, using the slide above as a discussion guide. It’s not that hard to have the conversation with your loved ones once you get started.

We make choices throughout our lives – where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don’t express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they’ve talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide (that’s it above) and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let’s start a viral movement driven by the change we as individuals can effect…and the incredibly positive impact we could have collectively. Help ensure that all of us – and the people we care for – can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )

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The Valley of Death

November 20th, 2008

Sharon Begley wrote for Newsweek Magazine an article entitled Where Are the Cures? Scientists call the gulf between a biomedical discovery and new treatment the “valley of death.” This has been a topic about which I have written several times. As a relative newcomer to the world of scientific research, my journey has been somewhat perplexing and always disconcerting. Every day articles, web stories, and scientific papers cross my desk touting the amazing discoveries that are being made at the basic research level. When I query my insiders, however, they point out that these discoveries very rarely ever get to the public for their care and treatment.

Some of the reasons behind this gap in medical science lead back to a broken system with inappropriate incentives locked firmly into place. How do we get the basic discoveries to be translated and moved into actual treatments?

Why are so few of the discoveries making their way to both treatments and cures? It is because our system of NIH-sponsored science is set up to discover things; plain and simple. Once the discovery is made, articles can be written, which is the sought after reward in academia since these publications lead to more grants from the NIH, and so the circle goes round and round.


Image Credit: Corbis

The obstacles to translational research in which the studies actually move from the scientist’s bench to the patient’s bedside are so intense that they are referred to in some areas of the scientific community as the “valley of death.” According to Begley’s article, “The valley of death is why many promising discoveries-genes linked to cancer and Parkinson’s disease; biochemical pathways that ravage neurons in Lou Gehrig’s disease-never move forward.”

The author challenges the incoming Obama administration and Congress to take a look at this daunting dilemma and to begin to revamp our biomedical research system by creating what Richard Boxer, a urologist at the University of Miami, and Lou Weisbach, a Chicago entrepreneur, call a “Center for Cures” at the NIH. Interestingly enough, the model that they endorse is exactly what was created here in Windber where multidisciplinary teams of biologists, proteomic and genomic scientists, technicians, and biomedical informatics specialists work together with Walter Reed Army Medical Center to move a discovery to an actual cure.

Of course, with the cuts made to the NIH funds, creating anything new that is unfunded could take away from basic research, and limit hopes for these cure discoveries. The article explains that while the NIH budget was doubling, new drug approvals fell from 53 in 1996 to 18 in 2006. What’s wrong with this picture? Twice the money, less than half the discoveries.

The sad case, however, is that even those organizations that try to establish these new world order cure centers are not funded by the NIH because of this fundamental design to enhance only basic research. The article ends with this: “I’d be willing to put up with potholes in exchange for a new administration spending serious money to take the discoveries taxpayers have paid for and turn them into cures.”

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As Close to Home As You Can Get

October 15th, 2008

Yesterday afternoon the realities of humanism, mortality, and fear attempted to take me out for about the one millionth time in my life. A phone call came from a loved one casually explaining that the doctor had potentially discovered a problem that needed further examination. When the office called for an appointment to have the scan done, they were told that it would be approximately a week before there was an opening in the schedule.

As an insider, I knew that a certain number of slots were held each day for emergency or unscheduled procedures. Not unlike the hotel that holds back a room or two from the 1-800 reservation list, just in case a preferred guest or luminary comes through the doors, flexibility is something that hospitals have to embrace at some level.

Taking the Hell out of Healthcare by Nick JacobsOnce again, as an insider, a call to the department resulted in an immediate invitation to come in for the test the very next day.

My route to health care management was a particularly unique and circuitous route, and it left me asking the question, “why does it have to be this way?” I’ve personally done everything that I can to make it humane, patient centered, and sensitive.

If you or your loved one wants to know the inside story on how hospitals work, take a look at my new book, “Taking the Hell out of Healthcare.” It really can help. It is a simple “how to” book aimed at the everyday person who is having to deal with this complex and sometimes difficult world of health care.

My passion and personal commitment has always been to patient advocacy, transparency, and human kindness. Find out how to make the system work for you.

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In Their Own Words: Patients, staff and physicians on their experiences at Nick’s Planetree hospital

October 5th, 2008

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