In memory of well-known neurologist and author Oliver Sacks, MD, who died yesterday: A look back at a lengthy conversation he had with us in 2012. For this 1:2:1 podcast, Paul Costello, chief communication officer for the medical school, spoke with Sacks about the discoveries Sacks made while writing his book The Mind’s Eye, and how Sacks was grappling with his ocular cancer.
My favorite part, as excerpted in an issue of Stanford Medicine magazine, was a quote of hope from Sacks: “I will say to patients, “I’m not sure that I can cure you or I can help this directly. But let’s think about other ways of living, other ways of doing things, and think positive.”
Each year, about 2.6 million people die in America. Although past research has shown that 7 out of 10 of us prefer to die at home, an estimated 70 percent of people die in the hospital, nursing home or long-term care facility. The disconnect between where people die and how they would prefer to spend their final days often happens because loved ones and doctors don’t know their end-of-life wishes. Only 20 to 30 percent of Americans have completed advanced directives.
It’s not easy to talk about death, and the terminology used in advance directives can be confusing. I remember having to complete the form with my husband shortly before the birth of my first child. Despite having been in a relationship for 12 year, we had never discussed end-of-life issues. Imagining the scenarios that might lead to either of us being in a life-threatening situation was an extremely emotional exercise — especially as we awaited our son’s arrival. Did we want doctors to use every intervention possible to save our life? What if it meant sacrificing our quality of life? Did we want to be on life support? If so, how long?
We eventually turned to a friend, who was also a physician, to help us sort through the process. But we didn’t talk to our own primary care doctors and, to this day, our doctors have never asked us if we have an advance directive or about our end-of-life preferences. And this isn’t unusual. Recent research from VJ Periyakoil, MD, director of Stanford’s Palliative Care Education and Training, shows that most doctors struggle to talk with patients about what’s important to them in their final days, particularly if the patient’s ethnicity is different than their own.
In the latest 1:2:1 podcast, Periyakoil discusses her study findings and why it’s critical for all adults to complete an advance directive and initiate a conversation about their end-of-life wishes with their doctor and family. To get these conversations started and help patients navigate the emotionally-charged process, she launched the Stanford Letter Project, which provides templates in a range of languages asking patients simple questions about how they want to die.
Listen to the full podcast to learn more about the project and hear from Stanford Letter Project users about how they want to spend their final days.
Ricard is on a cross-country speaking tour spreading his belief of how “altruism is the vital thread that can address the main challenges of our time, from economic inequality to environmental sustainability, from life satisfaction to conflict resolution.”
The French native is an internationally bestselling author (an earlier book, Happiness, A Guide to Developing Life’s Most Important Skill, was a huge global success), a scientist with a PhD in molecular genetics, and a photographer. The new book is a tome and perhaps even a salve for these turbulent times when the seams of the world seem to be tearing apart.
Ricard is a gentle man. He resides in a monastery outside Katmandu that sustained significant damage when an earthquake devastated Nepal in April. (His foundation, Karuna-Shechen, is raising funds for disaster relief.) At the age of 20, he went to India to meet the great masters of Tibetan Buddhism. He returned again in 1972, to study full time and lead a contemplative life, often times in isolation for long stretches of time. I asked him if the life of solitude was difficult; he told me it’s a question he’s frequently asked.
In this 1:2:1 podcast, we spoke about the intersection of neuroscience and meditation and the enormous growth of mindfulness in the U.S. I wondered whether he thought mindfulness was becoming too commoditized. For instance, would the world be better off with mindful drone operators? He thinks not. I also asked him about his purpose in life. But the main focus of the interview is his new book and his view that now is the time to spread altruism as the world desperately needs it and is primed to respond.
Ricard left the Bay Area over the weekend moving on to Los Angeles, Washington and New York to spread the word and demonstrate altruism in action.
I started my recent conversation with Stanford psychiatrist and neuroscientist Amit Etkin, MD, PhD, with the March 24 crash of the Germanwings aircraft. The pilot, now known to have had a history of depression, was on an apparent suicide/homicide mission, killing 150 passengers when he crashed the plane in the French Alps. I wondered, could this tragedy in any way serve as a teachable moment to help de-stigmatize mental illness? Was it possible at all in the midst of a senseless horror to also have any constructive dialogue about mental illness?
I guess I already knew the answer, but Etkin confirmed it. He told me that when a horrendous event occurs like this, someone has to accept blame, and “that already colors the conversation you will have.” It’s not like when an admired public figure discloses a mental disorder and a conversation about mental illness can potentially enlighten the issue. The sheer tragedy, Etkin said, overwhelms any attempt to educate or lessen the stigma about mental illness.
We went on to talk about the plasticity of the brain and its ability to recover, and a lot about the progress in brain research and why he believes we’re well into a new area of discovery that will reap benefits. And I asked him what Freud would think about this moment in time in psychiatry. Would the father of modern psychiatry see progress in the field if he were transported to today?
Freud, as a clinician, would be disappointed that “we’re not even close to cures now compared to 100 years ago when he lived,” Etkin responded. Freud’s early work, said Etkin,”was to actually try to understand the brain basis with the very, very rudimentary science at the time, of the things he saw clinically. I think that would make him happy – that now there’s a connecting of things grounded in the brain that there wasn’t a couple of decades ago. This is really a relatively new development with brain imaging.”
Etkin does offer great hope and believes the advances in the treatment of mental disorders that are well underway will be transformative in the future:
I think we are now at the point in psychiatry and in neuroscience relative to behavior and emotion where we finally have some of the tools we need to answer the questions that we want to answer and [are] no longer as limited by not having had those tools… Asking questions with the right tools will allow very, very big questions to be answered.
Next month’s inaugural Childx conference will bring a diverse group of experts to Stanford to discuss big challenges in infant, child and maternal health. Today, in a new 1:2:1 podcast interview, stem cell and gene therapy expert Maria Grazia Roncarolo, MD, provides an interesting preview of a once-controversial area of research that will be featured at the conference.
Roncarolo talks about the history and future of stem cell and gene therapy treatments, which have recovered from tragic setbacks such as the 1999 death of 18-year-old Jesse Gelsinger in an early gene therapy trial. The early problems forced researchers to reevaluate what they were doing, with the result that the entire field has reemerged stronger, she explains:
I would say that there were major problems, that we underestimated the complexity that it takes to manipulate the genome, and to introduce a healthy gene to fix a genetic disease. However, from these mistakes and from these tragedies, we learned a lot. We were really forced as doctors, and more importantly, as scientists, to go back to the bench and develop better technologies and to understand more of what was required. … [Today] we use better vectors — which are the carriers to introduce the healthy gene — we know much more about what we have to do to prepare the patient to receive the gene therapy, and we also learned that we need to do a very careful monitoring of the patients to really understand where the gene lands in the genome.
At the Childx conference, Roncarolo will moderate a panel on “Definitive Stem Cell and Gene Therapy for Child Health,” hosting such guests as GlaxoSmithKline’s senior vice president of rare diseases, Martin Andrews, and Nadia Rosenthal, PhD, founding director of the Australian Regenerative Medicine Institute.
Information about registration for Childx, being held here April 2–3, is available on the conference website.
Editor’s note: Paul Kalanithi passed away on March 9, after this post was published.
Frankly, I didn’t quite know how to begin my conversation with Paul Kalanithi, MD. How do you talk to a 37–year-old man about his terminal illness and facing death? A conversation with someone so young who’s the father of a small child is supposed to be ebullient, not dark.
Kalanithi, a Stanford Medicine neurosurgeon and fellow with Stanford Neurosciences Institute, was diagnosed with advanced stage lung cancer in 2013. His illness is terminal. While he’s hopeful that a treatment may extend his life, there is no cure. He faces big questions and small ones. And he wonders: “How do I talk about myself – in the present, past or future tense? When someone says, ‘See you next year,’ will I?”
It all began with back pain, night sweats, weight loss and fever. His neurosurgical training prepared him for what he reviewed on his CT scan. Metastatic cancer. He responded well to his initial treatment plan, but a second round of chemotherapy last spring led to a number of complications and setbacks. Though he finished his residency he’s now taking time off to recover and regain his strength. He remains hopeful about a return to neurosurgery, yet he has to prepare for an end. He’s spoken with a palliative-care expert. He’s mulling the existential questions and trying to grapple with moving on while not giving up. He takes comfort in the words of the Irish novelist and playwright, Samuel Beckett: “I can’t go on. I can go on.” They’ve become sort of his mantra.
Still, he knows he faces the inevitable and whether it’s a year, two years or five, terminal is the diagnosis. He’s trying to find a way to leave a trail of bread crumbs to his life so his child will know she was loved deeply when his presence is all but a shadow.
I spoke with him last November for a 1:2:1 podcast while he was in the throes of writing a book proposal. It was hard for me at points in our conversation to keep it together as our talk pried open my own grief over my brother’s death to cancer at age 48.
Kalanithi also wrote a beautiful piece for Stanford Medicine magazine. It’s magical. It’s lyrical. It touches the heart. And it’s clear, no matter what his health status, no matter what the outcome, he will live on.
Do you do yoga, take probiotics, see a chiropractor, or follow a special diet? If so, you’re not alone; roughly 34 percent of Americans make use of complementary therapies, and these are among the most popular ways to do so.
There’s a quiet dignity that envelopes Abraham Verghese, MD. You can imagine other authors whose books have scaled to the top to be taken with themselves, hardly humble, but that’s not the case here. When you get to know him, you realize he’s a man of great depth, with a wonderful soul and a deeply felt sense of humanity. When he talks about treating patients it’s with reverence (“There’s a saintliness I saw in so many of my patients,” he told me) – as if each time he crosses the threshold into a patient’s room he’s entering hallowed ground.
Verghese has written two searing works of nonfiction: My Own Country, a paean to the young men he treated for HIV-AIDS when it was just emerging as a human scourge, and The Tennis Partner, a loving eulogy to a best buddy whose life went off the rails. Then the blockbuster novel Cutting for Stone: atop the New YorkTimes best seller list for two years and selling more than one million copies. It’s a sweeping tale of how time transforms family – jolting the reader from the first page, where a Roman Catholic nun gives birth to twins boys and dies on the operating table. I read it during the height of the global economic chaos in 2009 and was transported each evening, thankfully, to another world outside of monetary meltdowns and fiscal maelstrom.
In this 1:2:1 podcast, Verghese and I talk about time’s impact on medicine, novels and life. (Time is the theme of the current issue of Stanford Medicine magazine.) About life, he tells me, “There’s a poignancy to living because we won’t live forever… As John Irving says in one of his books, ‘Life is a terminal condition. It’s about to run out on all of us…’ There’s no exception to that. And I think, in a way, that’s what makes life so beautiful.”
This podcast is accompanied by a Q&A with Verghese in the magazine.
A New York Times review called Steven Brill’s book, America’s Bitter Pill, “a thriller.” Brill’s tome on the building of the Affordable Care Act (ACA), aka Obamacare, “a thriller?” I thought. What recent treatise on the inner workings of public policy has garnered that sort of description? Didn’t the term “thriller” belong to writers like Paula Hawkins, Dean Koontz, Gillian Flynn and James Patterson? But Brill’s meticulous narrative of how Obamacare was constructed is a public-policy thriller, and the suspense he writes about is how the law was brought from broth to soup.
While Brill is hardly a public-policy advocate (he’s a long time investigative reporter), he does laud the president’s herculean effort to give millions of Americans access to affordable health care. He just doesn’t believe that any of the big “players” in health care – hospitals, device makers, insurance companies or pharmaceuticals – felt a pinch of economic pain, and he sees America’s health care system still as an old “jalopy” financially out of control and enriching special interests.
The seed for the book was spawned in a 24,000-word article in TIME magazine in April 2013. A year later, while reporting on the rollout of the ACA, Brill was diagnosed with an aortic aneurysm – flipping the story and putting investigative reporter onto the operating table as a very real person needing cardiac surgery.
At that moment I wasn’t worried about costs; I wasn’t worried about a cost-benefit analysis of this drug or this medical device; I wasn’t worried about health-care policy. It drove home to me the reality that in addition to being a tough political issue because of all of the money involved, health care is a toxic political issue because of all of the fear and emotion involved.
At the end of my conversation I asked Brill if there was one question he’d been surprised that he’d not been asked during his media blitz, which began with a rollout by Lesley Stahl on CBS’ 6o Minutes. “Yes,” he said, “you just touched on it.” How would his book had been different if he’d not had an aortic aneurism, a cardiac operation and become a patient? So how would Chapter One have begun?
I hope you’ll listen to my latest 1:2:1 podcast to hear what he has to say.
A wave of changes in state laws on the use of marijuana for medicinal and recreational purposes has stirred the American Academy of Pediatrics. It’s taken 10 years for the AAP to update its policy on the legalization of marijuana, and they released its new one on Monday.
The organization still opposes legalization but it has opened the door to reform in several ways. First, recognizing that minority kids bear the brunt of criminal penalties for pot use, they call for decriminalization. Second, they call for the U.S. Drug Enforcement Agency to reclassify marijuana from a Schedule 1 listing for controlled substances to a Schedule 2. This action would effectively allow more research to be conducted and in turn scientifically determine where marijuana is most effective as a treatment. A review by the federal government is currently underway.
I asked Stanford pediatrician Seth Ammerman, MD, the lead author of the statement, what the AAP was trying to achieve with its policy redo and why such a restrictive stance on legalization since the train for legalization – recreational and medicinal – seems to have already left the “coffee house.”
In this 1:2:1 podcast, Ammerman cites major two concerns. First, if legalized and commercialized, marijuana will become a big business, and the same marketing efforts by tobacco companies that encouraged teens to take up cigarettes will lasso them to pot smoking. “Well, aren’t kids smoking pot already?” I asked. Ammerman fully realizes that any teen who wants pot can readily buy it – legalization, to the AAP, is an imprimatur. Secondly, Ammerman cited, as does the new policy statement, the compelling and growing scientific evidence that the brain in formation continues to gel through the teen years and into the 20s. Marijuana, just like alcohol and any other drug, is likely to play a lot of bad tricks as the prefrontal cortex solidifies.
New research has also demonstrated that the adolescent brain, particularly the prefrontal cortex areas controlling judgment and decision-making, is not fully developed until the mid-20s, raising questions about how any substance use may affect the developing brain. Research has shown that the younger an adolescent begins using drugs, including marijuana, the more likely it is that drug dependence or addiction will develop in adulthood.
Ammerman says that the AAP will follow closely what happens in states where marijuana has been legalized both for health and recreation, and it will look carefully at what future evidence suggests. Clearly, there’s still a lot of smoke around this issue.