This week, longtime New York Times reporter and popular “Dot Earth” blogger Andrew Revkin vividly describes his 2011 stroke in the first-person piece “My Lucky Stroke.” He includes these “prime take-home points”: “Take your body seriously. Time (wasted) is brain (lost). Question authority, but not too much. Old habits die hard.”

Dr. Lee Schwamm, chief of Massachusetts General Hospital’s stroke service and medical director of Mass General TeleHealth, would suggest that readers take away some rather different stroke lessons from Andy Revkin’s story. He shares them here.

By Dr. Lee H. Schwamm
Guest contributor

I congratulate the journalist and blogger Andy Revkin for courageously sharing the story of his stroke and his subsequent recovery. I also thank him for taking the time to share his personal experience for the benefit of his readers, and for the opportunity it presents to highlight some key learning points for patients, as we dissect his journey through the health-care system.

Mr. Revkin was relatively young and healthy, out for a run with his son, when he experienced stroke symptoms. All too often, when we think of stroke, we envision an older patient clutching their chest and being unable to move or speak. This stereotype is dangerous, both for patients and health-care providers, because it lowers our sensitivity to stroke-like symptoms in patients of any age.

Mr. Revkin and his son were concerned enough about his symptoms that he went home, but they didn’t appreciate the immediate seriousness of his condition and he took a shower, hoping his symptoms would resolve. Watch the video clip above showing a young news reporter having stroke-like symptoms, and ask yourself, would you have called 911 if you’d been present? You should have.

Then Mr. Revkin did what generations of doctors have advised us to do for a heart attack; namely, take some aspirin and call your doctor’s office. Unfortunately, when it comes to stroke, there are two types: those caused by blocked arteries (ischemic) and those caused by rupture of blood vessels (hemorrhagic). It’s not possible to tell just from symptoms if a stroke is ischemic or hemorrhagic; only a CAT scan or MRI can distinguish them.

Obviously, you don’t want to take an aspirin if you’re having bleeding in your brain, as it will make the bleeding worse. But it’s also not a great idea to take aspirin if it’s an ischemic stroke, especially not six aspirin, as Mr. Revkin did, because there are powerful clot-busting drugs that can be given to reverse the disability caused by ischemic stroke. These drugs — the main one is known as tPA — are only effective if they are given within the first 4.5 hours after the start of symptoms, and aspirin might increase the risk that the drugs could convert an ischemic stroke into a giant hemorrhage that could be fatal.

It’s also really important to realize, as Mr. Revkin mentions, that “time is brain.” This expression reflects the fact that without treatment to restore the blocked blood flow to the brain, 2 million nerve cells are dying every minute of continued stroke.

So what’s the best way to act fast and to get help fast? First you need to know the warning signs so you can recognize stroke. A simple memory tool is the acronym FAST, which stands for Face, Arm, Speech, Time: Is the Face drooping or uneven? Does one Arm drift down when held outstretched? Is there trouble with Speech or understanding?

If any of these are present, then it’s Time to call 911. The terrific animated public service message below helps reinforce this critical message and has been shown in studies to improve detection and recall of stroke symptoms.

The next issue is how to get help, and many studies have shown that if you arrive by ambulance, your odds of being seen rapidly and getting the right treatment are dramatically increased, because arriving by ambulance already signals this may be an emergency.

When EMS responds to your call for help, they need to decide where to take you, and there are many different methods they might choose to make that decision.

If you can’t breathe, they will take you to the nearest hospital; if your vital signs are stable, in many states they will take you to the nearest stroke center. Different organizations certify these stroke centers and not all stroke centers are alike. In many cities, there may be more than one nearby stroke center. So if you’ve done your homework as detailed below, you may want to weigh in on where you or your loved one is taken.

To see a map of stroke centers near you, click here and enter your zip code. There, you can select centers certified by the Joint Commission, which accredits and certifies American health care facilities, as having the processes in place that lead to quality, or by the American Heart Association Get With the Guidelines Stroke program that have demonstrated high rates of actually providing evidence-based treatments for stroke, including rates of tPA use greater than 85% of all eligible patients.

A recent editorial highlights the differences in these certification programs and explores how the different factors motivating certification might determine the quality of care that can be provided. It’s hard to tell why a center near you has chosen to become a stroke center, but as always, look for the other signs of excellence such as local reputation, service to the community, the presence of their doctors and educators serving as leaders in their fields.

As Mr. Revkin notes, telemedicine-enabled stroke care is revolutionizing the field of stroke, and programs and centers from across the country now provide this service to increase access to care and mitigate disparities in acute stroke care.

A recent survey documents programs across the United States, based at leading academic medical centers like Partners Healthcare and the Mayo Clinic as well as for-profit companies, all working to bring stroke care to the bedside wherever it is needed.

This is critical, since not every hospital has the skills and the staffing to treat acute stroke properly and safely. So look on the map cited above, ask around, and find out why the hospital near you isn’t certified, or if it is certified, why it hasnt won any awards for its care. Be an advocate for having the highest quality of stroke care in your community, since you never know when you or someone you love might need it.

Sadly, Mr. Revkin’s story is all too common, that a patient has to be the one to raise the question of whether stroke might be the diagnosis, and all too often, the chance for treatment has evaporated before the diagnosis is made.

Fortunately, it sounds like he made a substantial recovery. The good news is that most stroke patients experience some recovery, and many have a complete recovery and return to their lives, their homes and their work.

I will end by sharing with you the take-home points I give all my patients: Be prepared. Know the warning signs. Know how to activate EMS and say the word “stroke” when you call. Act FAST if you suspect a stroke. Know where the nearest stroke center is located. And know that getting to the hospital quickly is your best shot at a full recovery.

[Posted by Carey Goldberg]

“Is this begging for parody or what?” I thought. Massachusetts General Hospital paid its employees $250 each to watch a video reminding them to be nice to patients?!

That was my first reaction upon reading this scrupulously deadpan Boston Globe story headlined “Mass. General employees watch customer service video — for $250.” It carefully notes that the $250 incentive brought complaints from some competitors at a time of tight health care dollars, but also that such pay is “an approach common in other industries and that proved to be an overwhelming success for the hospital.”

(Dear Boston Globe: At times like this, I can’t help hoping that you’ll be bought by The Onion or The Daily Show. Can’t you have even a little fun with news that makes people go “Huh?”)

So how could one best bowdlerize the earnest, mission-driven video above featuring Mass. General chief Dr. Peter Slavin? One idea: You could provide translations to plainer speech. For example:

Slavin: “It’s also important that we speak well of each other and of other departments when interacting with patients and their loved ones, to help them feel assured of our teamwork in caring for them.”

Translation: When your colleagues are jerks, do not scare patients by telling them about it.

Slavin: “There is no doubt that even long-time patients and their families can often be nervous and uncomfortable when coming to the hospital or visiting their doctor or other clinician. How we first greet them often sets the tone for a successful positive admission or visit.”

Translation: Most people walking into our halls are scared out of their wits. Have a heart.

Readers, other translations welcome. But in truth, I come away from watching the 11-minute video with the sense that though it was meant for the hospital’s 22,000 staffers, it is an excellent tutorial for every one of us as potential patients.

Consider these “Always behaviors” asked of staff:

• Choose the attitude of ‘I’m here to help.’
• Make eye contact with guests and say hello.
• Wear your name badge.
• Listen carefully.
• Respond to questions and concerns.
• Hold doors and yield to wheelchairs and stretchers.

Was that your experience when last you were in a hospital? Also, some interesting digital-world points:

“If you enter an elevator with a patient who just received bad news and you have headphones on with music blaring, you may convey insensitivity and lack of respect.”

“Maintain appropriate use of cellphones and iPods, and curb the personal Internet use and Website browsing.”

And more. Did you know that you should be able to expect these from medical staffers treating you?

“When entering a room, always greet the patient and their loved ones, and take the time to state your name, title and your role in their care.”

“Keep patients updated, especially if they will see multiple caregivers or are left in an exam room or waiting room in between visits.”

“Always make sure to ask for and answer any questions the patients may have and make sure they understand all your instructions.”

“Saying goodbye is just as important. Let’s all make sure we leave a last impression that’s just as pleasant and welcoming as the first.”

it’s a bit jargony, but the video advises staff that when problems arise — when, say, a patient has been waiting more than an hour for an appointment — the guiding acronym is LEAD: Listen, Empathize, Apologize, and Do the right thing, with timely corrective action.

That long-waiting patient, for example, is offered two free parking passes. I took careful note of that little segment: Next time I’m kept waiting a long time at any hospital, at least I’ll know what some in the industry think is the going price for my wasted time. Whether it’s a fair price — well, that’s a different question…

By Dr. Steven Schlozman
Guest contributor

I am a physician practicing in Boston. I do my best to get my work done as carefully and efficiently as possible.

I am writing to you right now, in real time, as I enter my…wait for it…38th minute on hold with Blue Cross/Blue Shield in my attempt to gain approval for a treatment that my patient absolutely needs. No one who knew the details of this case would argue otherwise; not politicians, or business specialists, or cost efficiency specialists, or medical school professors, or anyone really. Neither would anyone deny that the treatment that I am trying to procure for my patient is costly. Finally, no one would deny that it is legions more costly to not treat my patient with the treatment for which I am now sitting on hold and trying to procure.

Still, here I sit. I sat initially for 26 minutes, at which point the very pleasant muzak stopped and a recorded and maddeningly soothing female voice told me that I would “have to call back later.” Then the line went dead.

So I called back later.

I called back exactly 12 seconds later, and that was now 42 minutes ago. I mean, 42 minutes, in real time, as I write this letter. I have patients in the waiting room who will understandably expect me to get to them soon. I also know that there are those who will tell me that this is what I signed up to do for a living.

But they’re wrong. I did not sign up to do this for a living. There are no courses in medical school about how to spend one’s time on hold while patients need your help.

Minute 58 just passed, by the way.

And yes, I am writing this letter here at my desk, when I could be doing other things.

Except I can’t. I’ve written all my notes, called back all my messages, and….I can’t listen to my messages or renew another patient’s prescriptions or reschedule a kid who can’t come see me because of Bar Mitzvah practice or a soccer game or call a school counselor or speak with another doctor or do all sorts things that could really help and make a difference for patients because I am still on hold and have to be, on the off chance that a living and sentient being will actually speak to me. .

I could have a nurse wait on hold, or perhaps an administrative assistant, but that means I will be interrupted in the middle of actually tending to a human being when a living person does happen to show up on the other end of the phone. That’s not good.

Wait! The same message just came on:

“We’re sorry…this call is being disconnected.”

They hung up.

Errrr.

I just called back. Clock starts now. Two minutes in so far. More muzak.

So, why would anyone do this? Why put up with this nonsense any longer than the time I’d give to filling up my hamster’s water bottle?

Well, it seems to me that the hamsters can be kept alive in about two seconds of care with relatively little bureaucratic oversight.

My human patient, though, now has endured two hang-ups from his insurer, and…

Wait!

Irony – the muzak at….13 minutes… is a soothing and mind-numbing version of “You’ve got a friend.”

Some friend.

So, I am going to end this letter now. I’m still on hold, but if you bothered to read this you’ve probably finished your coffee or you need to pee or something. I need to pee also, by the way. But that will have to wait.

Help. I love being a doctor.

But this isn’t doctoring.

• The college student who came to the emergency room for an intense hangover, only to be told she would need a spinal tap to rule out possible brain hemorrhage. (True story. Spinal tap as in puncturing the back to draw fluid. For a hangover. She slipped away instead.)

• The drowsy obese woman hospitalized for days for a possible clot when all she really had was sleep apnea.

•The strapping middle-aged man whose chest felt sore after a day of moving heavy furniture, condemned to a battery of tests for possible heart attack.

These are the kinds of alarming cases that populate a provocative new book to be published next week: “When Doctors Don’t Listen: How To Avoid Misdiagnoses And Unnecessary Tests,”

Dr. Leana Wen, a senior resident in emergency medicine at Brigham and Women’s Hospital and Massachusetts General Hospital, co-authored the book with Dr. Joshua Kosowsky, clinical director of the Brigham and Women’s emergency department — a new-minted doctor joining forces with a senior colleague, both seeking to warn patients about prevalent flaws in medical thinking that could cause them harm — and how to counteract them.

Our conversation, lightly edited, is below, and beneath it, an abridged excerpt recounting the tale of the hung-over college student in more detail.

Here’s how I think I’d distill the message of your book: Patients, beware of “cookbook medicine” and of getting stuck on a “diagnostic pathway,” of doctors who get hung up on trying to “rule out” a “worst-case scenario,” and so bombard you with yes-and-no questions that you cannot tell your story, the story that may actually point to your diagnosis.’

But how would you distill it, and translate those phrases I just used? 

I like what you said. The way I think about it, too, is that our health care system, and our individual parterships with our doctors, have become so out of control, and patients have the ability to — and have to empower themselves to — take control of their health care. And they should start by understanding what the doctor’s thought process is, understanding the ‘cookbook medicine’ that many doctors practice, and what they can do to focus care on their individual symptoms and story.

How would you explain what you mean by cookbook medicine?

Doctors are under a lot of pressure to be faster and faster and see patients in shorter and shorter periods of time. And so instead of listening for 10 minutes without interruption, they begin to ask yes/no questions –

Yes, I was amazed by the statistic in the book that the patient on average only gets 12 seconds to start telling the doctor what’s wrong before they get interrupted —

Another study recently showed that it’s more like eight seconds. And so that’s how cookbook medicine comes about. Anyone can relate to being asked, ‘Do you have chest pain? Do you have shortness of breath? Do you have headache?’ That’s not individualized care, that’s putting you in a pre-set mold and trying to say that whatever applies for everyone else, also applies to you.

For example?

There was a woman in her sixties who was working out at the gym and passed out. When she came into the hospital they were focused on her heart because that’s what their yes-no questions brought up, and they ran all kinds of tests looking at her heart, but for several days she was actually having a raging gallbladder infection.

And so that’s the danger of cookbook medicine: not only does it waste money and result in unnecessary tests, it could result in significant delayed diagnoses and lots of frustration and pain. If they had only listened to her story, even for let’s say 30 seconds, they would have found out that she had some abdominal pain and some nausea preceding the event, which was suggestive of something other than heart.

You have a whole chapter countering the skeptics, but I’m still left wondering: Generally, it’s presented as progress that we have more and more evidence-based medicine and that we can increasingly use algorithms and even automated tools to get us to the right diagnosis. So are you really questioning whether that’s progress?

That’s right. I’m questioning that that’s progress. First, these algorithms and pathways are very helpful for treatment, but i would say dangerous for diagnosis.

For treatment, it’s fine because medicine has gotten so complex, and I, for one, would want my doctor to check the dose of a medication before they give it to me just to be sure. And to make sure that they count the number of sponges before they close my abdomen. So for treatment, checklists, algorithms and such are fine.

For diagnosis, using algorithms is cookbook medicine and is putting me in the same pathway as all the other patients and not personalizing my care. And so I do think that’s dangerous and bad medicine.

The examples clarify it, but I find it a little hard to wrap my head around it at first, that it can actually be detrimental for doctors to follow a standard practice –

I’ve been speaking with patient groups, trying to explain it. My mother had breast cancer when I was a medical student, and she died when i was a resident. In the process of trying to advocate for her health as her caregiver, I realized how much of a disconnect there is between patients and doctors. And so I’ve made it my life’s work to speak to patient groups and get people to advocate better for themselves.

I ask people: ‘How many of you have ever gone to the doctor and felt like you were not listened to? How many of you have come back with more questions than answers? The reason that not listening leads to bad medicine is that 80% of diagnoses can be made based on your history, but if you’ll be interrupted in eight seconds how can this diagnosis actually be made?’

Reading the book, I realized that I’m very much like your character Mrs. McCloskey, not at all a shrinking violet in my usual life, but when I see my doctor I turn totally passive. So I did find it transformative to be told, by another doctor, that no, I really should be speaking up for myself much more. Do you get that feedback often?

My mother had the exact same experience. She was a school teacher in Compton, a really rough area of Los Angeles, and knew what it was like to stand up for herself. But like you, she did not know really what to say to her doctors. She didn’t want to be a ‘trouble patient,’ that was a big part of it. No one wants to be the patient who comes in and throws down a bunch of papers on the desk and says, ‘You’re misdiagnosing me and you’re a terrible doctor!’ but there’s a big gray area between that and what it means to really advocate for your health.

What kind of feedback are you getting from your colleagues?

Actually excellent feedback. I don’t think any doctor or anyone, whether an insurance executive or a hospital administrator, wants to say that they’re against the principles of this book, because it sounds really bad to say, ‘Yeah, doctors should not listen to patients.’” And you can see from the list of endorsements we have that they include a lot of people who are powerhouses in medicine and leaders in health policy, just because this is a concept that they think is overdue.

Actually, we as physicians have been wanting our patients to bring these concepts up to us. And that’s why it’s an idea that’s accepted but in some ways unique, to say patients should be bringing this up — this idea of partnership with your doctor, of helping your doctor help you.

We cannot end without noting that you also hold up WBUR’s beloved Car Talk show as a model… 

My co-author and I are huge fans. we were very happy to mention Car Talk — they are so fantastic. Every weekend I tune in and listen to their show. I really believe it helps me be a better doctor.

How?

They are able to understand the essence of a car and the owner and everything surrounding that person by listening to their story. They’re such masters at asking the right questions, inserting the right pauses and within ten minutes they know everything about that person and their car, and they’re providing lots of life advice in addition to car advice. It’s such a good example of how diagnosis and careful listening  can work when done well by the doctor.

I think for the majority of patients, they may not have such master doctors and so that’s why we wanted to write this book. It’s for the average patient and the average doctor, because we believe patients can help their doctors help them.

So we can help our doctors be more like Click and Clack?

Exactly…

Readers, here’s a sample cautionary tale, the first one mentioned above, of the college girl with the hangover. It’s excerpted with permission from the book’s Website, which also offers free access to an excerpt on “The 8 Pillars For Better Diagnosis.“

Danielle is a 20-year old college student at the New England Conservatory. She came to the ER because of a headache. When she woke up this morning, her head hurt badly. Her mouth was dry, and when she tried to get up to go to the bathroom, she felt like she was getting faint.

She attributed all of this to drinking too much the night before—normally she has one or two drinks when she’s out with friends; last night, it was her roommate’s birthday, and she did three or four shots and had a few beers on top of that.

“The last time I had a hangover was a couple of years ago, and I think this was how I felt then,” she says. “My roommate Jackie told me to drink lots of water.”

Throughout the day, she felt too nauseous to eat or drink. When the headache didn’t go away in the afternoon, she called her mother. She doesn’t have a doctor in Boston because she doesn’t have any other medical problems and still gets her yearly check-ups over the summer when she’s back home. Her mom convinced her to go to the ER to make sure everything was OK.

Every provider who saw Danielle knew exactly what she had: a hangover headache. She received some IV fluids and was texting away on her phone. However, her doctors were following a “pathway”, a cookbook recipe for what happens when someone comes in with a headache—they needed to “rule out” a bleeding in her brain. Danielle got ordered for a CAT scan of her head. It was negative.

This was good news—or was it? Soon, she was being told that she needed to stay for a lumbar puncture: a spinal tap. The doctors began pulling out needles to put into her back. At some point, she excused herself to go to the bathroom. That was the last time she was seen: as far as we can tell, she escaped out the window of the bathroom. She left all of her clothes and shoes, and ran out in her hospital gown.

All of us can sympathize with Danielle. She was young and scared, and she didn’t want a procedure that she didn’t really need. Instead of a rational discussion with her doctors where she could make sure her story was heard and ask about the risks and benefits of testing, Danielle felt forced into doing something she didn’t want to do. She felt trapped—literally—by the doctors and nurses, by the hospital, and by the medical system.

We do not believe such an approach is conducive to good patient care. We believe in a partnership approach where decisions are made together, not simply based on worst-case thinking or mindless adherence to a depersonalized recipe. Danielle’s story is unfortunately far too common. We hear it every single day, and we write our book to help Danielle and patients her so that they do not have to feel trapped–but are rather empowered–to take control of their healthcare.

In an alert to its staff, Massachusetts General Hospital reports that it’s seeing a flu season of “impressive intensity,” with an additional 40 to 80 patients with flu-like illness per day at the hospital’s health centers, outpatient clinics and emergency department.

“This has strained capacity to its limits. Likewise, many inpatient beds have been closed to isolate influenza patients, and hospital and practice staffing has been stressed by illness within their own ranks,” says the alert from Jeanette Ives Erickson, Mass. General’s senior vice president for patient care and chief nurse.

The memo lays out “best practices” for infection control that many a workplace may want to post and disseminate. To wit: (Slightly modified to remove some specifics, and still somewhat hospital-oriented)

• No Heroes! Staff with flu-like [illness] should leave the office and STAY HOME per the protocols of Occupational Health:
Do not come to work if you have a fever of 100.5°F or more and one or more of the following symptoms:
§ Runny nose or nasal congestion
§ Sore throat
§ Cough
§ Body aches

• If symptoms start at work, do not wait to report symptoms or delay leaving work, as you are potentially infectious to others. You do not need to come to Occupational Health, but should report your illness to one of the nurses.

• If you are suspected of having or it is known that you have the flu you will be required to remain out of work until your fever is gone for 24 hours (without the use of anti-fever medication).

•  Please ensure that you follow protocols for giving patients and visitors masks at the earliest opportunity.

• Please continue to actively encourage colleagues to get a flu vaccine.

• Staff who have not yet had a flu shot must wear protective masks, per MGH policy.

Readers, would you like to see anything like this up in you workplace? Other suggestions?

In case you missed it, WBUR ran an extremely excellent story by reporter Fred Bever this morning that featured the scene at Massachusetts General Hospital’s central pharmacy:

Patients at Massachusetts General Hospital take some 400,000 doses of medication every month — 4.8 million a year. And until two months ago, close to a million of them were compounded by third-party vendors, such as NECC and, even more, Ameridose. Now, most of that work has been brought in house to MGH’s central pharmacy.

That means a far heavier in-house workload:

“We’ve increased our hours. We have three hoods that are full on all three shifts, that we didn’t have before,” [lead technician Meghan] Federico said. “We were Monday through Friday 7:30 to 4:00 operation, and now we’re 24/7.”

Check out the full story on WBUR.org here. It concludes that Partners Healthcare, the state’s biggest health care provider, “is mulling the idea of creating its own compounding pharmacy that would serve all the hospitals in its system.”

You want something done right, do it yourself…

The American Medical Association, which he belongs to, and the Massachusetts Medical Society oppose Question 2, the measure on next month’s state ballot that would allow terminally ill patients to ask a doctor to prescribe them life-ending drugs.

In contrast, The American Medical Student Association, which he also belongs to, supports it.

Ravi faced conflict within as well. He’d applied to medical school for the usual reason — to heal patients, as spelled out in the Hippocratic oath — not to help them die.

But his medical education introduced him to the complexities of modern American dying.

It stressed patient autonomy as a “central guidepost.” Yet he saw patients losing control as they neared death. “No patient that I have spoken to wishes to die in pain, alone, or hooked to a ventilator,” Ravi said, “and yet that is the way in which many patients pass away in the ICU.”

Seeing similar confusion about the ballot measure among his peers, Ravi and fellow fourth-year Grant Smith helped organize a panel discussion for all local medical students earlier this month at Harvard.

It let the audience pepper panelists on each side of the issue with questions, and also use the teaching tool of a case study: A hypothetical elderly man with metastatic cancer who comes to his doctor asking for a lethal prescription.

That case discussion, Ravi said, brought out a valuable consensus among the opposing panelists: All agreed on the need for more and better end-of-life discussions with patients.

But on the “toughest question” — “Ethically, is this right for doctors to do?” — there was no clear answer, he said. Rather, each side argued that its position represented the true embodiment of “Do no harm.”

If Ravi and his fellow students remain conflicted, they can at least be comforted that they are in plenty of good company.

By all indications, the ballot measure presents an extraordinarily difficult problem of medical ethics — a problem wrestled with nationally as states consider physician-assisted suicide laws. Thus far, only Oregon and Washington have passed them; polls suggest that Massachusetts may be next.

The ethical issues involved are hard and deep enough to divide not just medical associations but medical staffs — a Massachusetts General Hospital panel presented arguments for and against Question 2 earlier this month — and seasoned ethicists.

Consider the Boston-based Community Ethics Committee, a group of 18 diverse volunteers who gather to craft opinions on some of the thorniest of bio-medical issues.

They’ve managed to reach consensus on whether children’s organs can be donated after cardiac death but before full brain death; on social media use in medicine; and on whether medical staffers can sometimes refrain from resuscitating a patient even against family wishes. They’ve dealt with death before, on the issue of “continuous deep sedation” near the end. (Note to my family: Sounds good to me.)

But on Question 2, for the first time, they could not come to complete agreement, said the group’s founder, Carol Powers.

Instead of issuing a pro or con opinion, they put out a carefully considered White Paper that conveyed their dialogue on issues both practical and philosophical. They are also encouraging people with questions to come to a free public forum on Question 2 on Oct. 25 at Harvard. (Details here.)

The group did agree that the language of Question 2 is loaded. “Death with Dignity or Physician Assisted Suicide – neither term is both precise and fair,” the White Paper says. They decided to use “Choosing Medically Induced Death.” But otherwise, they ultimately concluded:

This Conversation involves an irresolvable dilemma. How does our society honor the choice of a terminally patient who wants to control the when, how and where of that most personal expression of a life – choosing a “good death” – while at the same time how does our society protect those among us who are most vulnerable from societal pressures to choose death and “so decrease the surplus population.”

“No amount of talking was going to make us come to one position or another,” Carol said.

The committee, aimed at community input into medical ethics, does not include doctors, but its members have spoken at various fora on Question 2, she said, and responses from doctors have been fascinating and sometimes surprising.

From a group of palliative care physicians, she heard that though they have the most expertise relevant to Question 2, they don’t want to take any sort of lead on it, because for the last 15 years they’ve been fighting the kinds of negative perceptions that prompt nurses who see them to ask, “So who’s dying?”

On the other hand, she said, among doctors who specialize in patients with disabilities and might thus be expected to oppose the measure, some have been very much for it.

The comments of one doctor, “a saint” who works with medically fragile patients, particularly struck her: “Even though he could understand the arguments for it — that there’s a sense of not only respecting a patient’s autonomy but that it can be construed as an act of compassion and care — he said to be honest, he could not imagine writing the prescription.”

“He just could not take that step mentally.”

The crux of the dilemma for doctors, Carol said, may be that if a patient can ask for a lethal prescription, “that changes the whole patient-physician relationship.”

In effect, the doctor’s role “has been reconceived,” said Prof. Dan Brock, a proponent of Question 2 and, until recently, the longtime head of Harvard Medical School’s ethics division. “It’s not always to extend life no matter what,” and that makes it more complicated.

He offered this context: Beginning in the 1960s, as life-sustaining treatments began to improve, they spurred a movement to give more end-of-life control to patients and their families, focusing largely on the ability to withdraw treatments that keep dying patients alive, such as respirators or kidney dialysis.

“I view the physician-assisted-suicide issue as, in a way, the culmination of this long process,” he said, “because it covers patients for whom there is no life-sustaining treatment to be withdrawn.”

“It’s supported by the same ethical values or principles that underlay the whole trend,” he said, “namely the importance of patient self-determination about what happens at the end,” and the recognition that in some cases, treatment may no longer benefit the patient.

It has become an accepted part of medical practice that patients have a right to refuse life-sustaining treatment such as a respirator, Prof. Brock said. And yet on Question 2, some doctors  express concerns about “playing a much more active role in the patient’s death. They’re providing the means for bringing about the patient’s death” rather than just letting the disease kill them. They feel that “‘We’re no longer healers, we’re now killers or enders of life.’”

“In fact,” Prof. Brock said, without getting into a long ethical argument, “a physician is in a much more active role in bringing about the end of the patient’s life when he or she removes a respirator on a clearly respirator-dependent patient. My own view is that when the physician does that, the physician kills the patient, though justifiably.”

Question 2 raises myriad such issues and concerns about the potential effects of this change in the doctor’s role. Oregon and Washington can provide helpful data on how the laws play out, but that still doesn’t make it an easy call in Massachusetts.

There seems to be easy agreement on only one point: It’s good that because of Question 2, people all over are discussing dying more than usual — and that includes doctors.

“No matter whether it passes or not,” Carol Powers said, “people are going to be talking about this, and that is a very good thing.”

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Further reading:

The Community Ethics Committee’s White Paper: Choosing Medically Induced Death

On Point: Death on Demand

The text of Question 2

“But how can this be? If there’s a big breakthrough in Parkinson’s disease treatment, wouldn’t we have heard about it? And if there isn’t one, isn’t the definition of a degenerative disease that it goes downhill? How can he have climbed back up again?”

Dr. Michael Schwarzschild, a Parkinson’s expert and director of the Molecular Neurobiology Laboratory at the MassGeneral Institute for Neurodegenerative Disease, kindly fielded my questions. First the disclaimers: He is not involved in Fox’s treatment, and has received grant support from the Michael J. Fox Foundation for Parkinson’s Research. Now the answer to my first query: What could it mean that Fox told ABC he “kind of stumbled onto a new cocktail of meds” that made him better enough to work again? Dr. Schwarzschild:

I heard his quote, too, and of course it’s wonderful that he’s making a comeback. In terms of what to make of this somewhat cryptic comment, I don’t think it relates to some new treatment that others don’t know about, or something newly approved and dramatic, because there isn’t anything like that.

As a clinician who treats patients with Parkinson’s, your impression is right: It’s a progressive neurodegenerative disease. On average, in typical or even not-typical Parkinson’s disease, it’s inexorable.

That being said, it’s not a constant decline even though it goes in that direction, and medication can have a huge effect. Levodopa, when it came around in the sixties and seventies, took people out of nursing homes. Usually, with someone who’s getting reasonable care, you don’t expect, late in the disease, to discover some combination of currently available medications that make a huge difference. But sometimes you do.

I’ll give you a couple of examples even with approved medications in the United States. People will often get a good response to the standard medication and as the disease progresses they’re still getting a good response but having more and more symptoms. A substantial number of people develop a complication of medications called dyskinesias – abnormal involuntary twisting or flitting movements, which were on full display in some prior public appearances of Michael J. Fox.

For people who have that sort of problem, there are some medication approaches that can bring a dramatic benefit. There’s a medication called amantadine which is probably the only standard anti-Parkinson’s medication that can improve dyskinesias rather than make them worse. For most people with Parkinson’s, amantadine is not a first-line therapy because they don’t tolerate it that well or only in low doses, but for some it’s just the right combination where they tolerate it very well and it has a good effect on both their dyskinesias and their typical symptoms of Parkinson’s disease.

Surgery for deep brain stimulation is another example, where someone may be doing very poorly and for a subset of patients, the response is very good. Someone can improve without breaking the laws of physics about Parkinson’s disease being an inexorably progressive disorder.

Another example: Sometimes someone is on a standard drug regimen, and there’s a whole assortment of adjustments to that standard regimen: they can take a medication every few hours to smooth out their responses, or they can take a medication that will make the standard medication last longer. There are currently something like 12 medications that are approved for just the motor symptoms of Parkinson’s disease, and sometimes there’s a combination that will be very helpful.

So again, being completely naive to what the basis is for his improvement, it’s not crazy given the fact that our symptomatic medications, while only partially helpful, can be helpful and sometimes dramatically so, either alone or in combination.

It’s also probably a good example that when things get complicated and advanced, it’s good to work with a clinician who has some experience with that arsenal. It can be worth it to pursue trial and error — carefully.

So is that potentially the broader lesson, I asked, to to keep trying?

It could be that this reinforces the idea that you shouldn’t give up. Even the medications we do have — although they’re not good enough and we need to strive to improve them — we still have the benefit in Parkinson’s disease of some very effective medications. And for the right people in the right combination, it really can make a difference, to work with your physician to find that right mix and balance.

And the pipeline for possible new medications?

There’s a tremendous amount of hope, and the pipeline is not bad. But there’s nothing on the verge of FDA approval despite exciting earlier stage prospects. There’s a range of novel candidate therapies under investigation, from gene therapy to antioxidants to modifications of old things in new forms that can impact the dopamine system, like caffeine.

One thing I’ll mention: An example of something that is close and a surprisingly good example of using what we have available more effectively to make a big difference: There’s a new formulation for levodopa given continuously by pump. It’s on the market in Europe and undergoing FDA review here. The preliminary reports from higher-level clinical trials look quite remarkable. These are the kinds of things that, even later in the disease, for patients who have fluctuations, can make a big difference.

Chris Myers on the video: “The first thing i felt was a huge bite on my left foot. It felt like i had my foot stuck in a refrigerator or a vise, and I knew instantly that it was a shark. And we started swimming as hard as we could toward shore.”

Chris says he had eight deep puncture wounds and it took 47 stitches to sew up his wounds. A couple of tendons in his ankle had been severed, and had to be surgically repaired. He can now walk on crutches and take a few steps on his own, he said, and is expected to make a full recovery.

“I feel very lucky to have made it back to that beach in one piece,” he says. “Very very lucky that my son did not get bitten, and very thrilled that the two of us are going to get to home today together.”

Old surfer saying: You don’t have to swim faster than the shark, just faster than your buddy. My thought: But if the buddy is your son, then do you maybe swim slower?

,

It included this:

In his inaugural speech that called for the hospital community to unite during the healthcare reform efforts now under way in the state, Slavin said “For more than 200 years, the hospital community in this state has tackled our society’s most significant health care challenges — influenza epidemics, polio epidemics, and world wars to name a few. I would argue that perhaps the most significant threat to the future health of the people of Massachusetts is the rising cost of healthcare itself. We must tackle this challenge head on just like the others. To do so is our greatest challenge, our solemn responsibility, and a remarkable opportunity for us to lead.”

My first reaction: Flu, polio, war — and health costs? Doesn’t that list end a little anti-climactically? (I’m reminded of the chorus “For God, For Country and For Yale,” cited as “the outstanding single anti-climax in the English language.”) On the other hand, if health costs are crowding schools and safety and more out of public budgets, then perhaps — ? If costs are keeping people from care, as today’s poll suggests? Readers, thoughts?

For Massachusetts medical insiders, here are the new MHA officers:

Chairman: Peter L. Slavin, M.D., President, Massachusetts General Hospital

Chair-elect: Patrick L. Muldoon, FACHE, President & CEO, HealthAlliance Hospitals

Trasurer: Michael V. Sack, FACHE, President & CEO, Hallmark Health Corporation

Secretary: Peter J. Holden, President & CEO, Jordan Hospital

Immediate Past Chair: Normand E. Deschene, FACHE, President & CEO, Lowell General Hospital

Immediate Past Chair Most Recently Retired: Ellen M. Zane, MA, Vice Chair, Board of Trustees, Tufts Medical Center

Trustees-at-large

Bruce S. Auerbach, M.D., FACEP, V.P. & Chief, Ambulatory & E.R. Services, Sturdy Memorial Hospital
John M. Lowe, III, Ph.D., MS, Trustee, Emerson Hospital
David E. Phelps, MBA, President & CEO, Berkshire Health Systems
Kathy Schuler, R.N., MS, President-Elect, Organization of Nurse Leaders- Massachusetts & Rhode Island, and V.P., Patient Care Services & CNO, Winchester Hospital
Kevin F. Smith, President & CEO, Winchester Hospital
Andrei Soran, MSM, CEO, MetroWest Medical Center
David E. Storto, President, Partners Continuing Care
Kevin Tabb, M.D., President & CEO, Beth Israel Deaconess Medical Center
Dianne J. Anderson, R.N., MS, President & CEO, Lawrence General Hospital
Howard R. Grant, JD, M.D., President & CEO, Lahey Clinic
Patricia L. Hannon, FACHE, President & CEO, New England Baptist Hospital
Michael K. Lauf, MBA, President & CEO, Cape Cod Healthcare, Inc.
Joel M. Rudin, CEO, New England Rehabilitation Hospital
Delia Vetter, Senior Director of Benefits and Programs, EMC Corporation – Other Field Expert
Neal J. Curtin, Esq., Trustee, Dana-Farber Cancer Institute, Inc.
John R. Fernandez, President & CEO, Massachusetts Eye & Ear Infirmary
Charles D. Gijanto, President, Baystate Regional Markets, Baystate Franklin Medical Center, and Baystate Mary Lane Hospital
Keith A. Hovan, President & CEO, Southcoast Hospitals Group
Edward H. Moore, President & CEO, Harrington Hospital
Francis M. Saba, CEO, Milford Regional Healthcare System, Inc.
Peter W. Siersma, M.D., Trustee, Cooley Dickinson Hospital
Kate Walsh, MPH, President & CEO, Boston Medical Center
Lynn Nicholas, FACHE, president & CEO, MHA

The Board also elected the chairs of each of MHA’s standing committees:

Bruce S. Auerbach, M.D., FACEP, V.P. & Chief, Ambulatory & E.R. Services, Sturdy Memorial Hospital – Chair, Clinical Issues Advisory Council
Charles D. Gijanto, President, Baystate Regional Markets, Baystate Franklin Medical Center, and Baystate Mary Lane Hospital – Chair, Standing Committee on Finance
Andrei Soran, MSM, CEO, MetroWest Medical Center – Chair, Standing Committee on Public Affairs
John M. Lowe, III, Ph.D., MS, Trustee, Emerson Hospital – Chair, Trustee Advisory Council