Thursday, June 26, 2014

How Doctors Choose To Die

The subject of palliative care, including how people choose to die, is the topic of one of my chapters in my book, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia.  I am currently working with the University of Colorado Hospital developing a research plan for a Parkinson's palliative care program (they are the first neurology department in the world to offer palliative care to their patients).  The research being planned would be patient and caregiver centered and focus on improvement in quality of life as a result of a new approach to the entire palliative care process. 
These articles from The Health Care Blog reflect what I believe to be a logical approach and appropriate attitude toward this difficult subject.  The fact that it is written by a doctor makes it even more interesting.
Doctors Really Do Die Differently
In late 2011, I wrote an essay called “How Doctors Die.” Drawing on my observations and experiences as a doctor, I reported that doctors tend to seek less end-of-life care than ordinary patients do. They know when further treatment is likely to be futile and when life would cease to be worth living. The point I wanted to make was that all of us should have the choice to die that way if we wish—at home, with family, without dramatic hospital interventions, without pain.
The response to this simple idea was overwhelming. I read thousands of comments people posted online regarding the end-of-life care of loved ones. They told of near-dead relatives being assaulted with toxic drugs and painful procedures for no good reason. I am haunted by one description of a patient who could neither talk nor move, begging with her eyes for it all to stop. Thankfully, such stories are slowly becoming less common, and, with an advance directive or POLST, you have considerably better chances of having a peaceful death, if that is what you want.
While the article rarely provoked hostility, it did, among some readers, prompt skepticism. I’d written the article in a personal, anecdotal style, so I rarely made use of numbers, studies, or charts. For example, Ezra Klein, writing in The Washington Post, wanted to see more evidence for my assertions. “Does anyone know of data on end-of-life spending for doctors?” he asked. “Or even on the percentage of medical professionals who have signed living wills?”

This essay is an attempt to address such questions. Perhaps it should be viewed as a set of endnotes to “How Doctors Die.” For every assertion of mine that was based on observation, I’ve looked for relevant scholarly evidence that might support or refute it. Here is what I found:
First, and most important, is the question of whether doctors, for the most part, die differently. One of the clearest indicators we have is a survey from Johns Hopkins University. It’s called the Johns Hopkins Precursors Study, and it’s based on the medical histories and decisions of students from the School of Medicine classes of 1948 through 1964 who volunteered to be part of the survey. According to the study, 65 percent of the doctors (or former medical students) had created an advance directive, i.e. a set of legal documents spelling out in advance what sort of end-of-life care they would like. Only about 20 percent of the public does this. When asked whether they would want cardiopulmonary resuscitation, or CPR, if they were in a chronic coma, about 90 percent of the Johns Hopkins doctors said no. Only about 25 percent of the public gives the same answer.
I also asserted in “How Doctors Die” that CPR is rarely as effective as people seem to think. What people have seen on television is at odds with happens in real life. A1996 study published in The New England Journal of Medicine found that CPR as portrayed on television was successful in 75 percent of 60 cases and that 65 percent of the patients went home. In contrast, in a 2010 study of more than 95,000 cases of CPR in Japan, health professor Hideo Yasunaga and fellow researchers found that only 8 percent of patients survived for more than one month. Of these, only about 3 percent could lead a mostly normal life. A little more than 3 percent were in a vegetative state, and about 2 percent were alive but had a “poor” outcome.
My sense that there’s a yearning among ordinary patients to have more peaceful deaths has been echoed in the research of University of Wisconsin-Madison nursing professor Karen Kehl. In an article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” Kehl analyzed a collection of relevant articles and, based on their contents, ranked the attributes of an ideal death as follows: being in control, being comfortable, having a sense of closure, having one’s values affirmed, trusting in care providers, and recognizing impending death. Hospitals cannot help with most of these things. Unfortunately, most patients do not see their wishes fulfilled. A 1998 study published in the Journal of the American Geriatrics Society looked at Medicare patients and found that, while most said they preferred to die at home, most died in hospitals.
I discussed the tense, and often tragic, circumstances that surround many of the treatment decisions made in hospitals. Often, I noted, family members or medical staff effectively override the wishes of a dying patient. The studies I’ve found on this suggest that family plays a particularly big role in taking things in an unintended direction, especially when there’s nothing in writing. A 2003 study published in theJournal of Clinical Oncology found that most patients and families agree in theory that patients should make their own end-of-life decisions, but in practice about half of families override the stated preferences of patients. They have disagreements about the use of life-sustaining measures, and they lack written documents to resolve the matter. In contrast, a 2010 study in The New England Journal of Medicine found that people with advance directives usually receive the care they’ve chosen.
Every doctor has heard stories about people who have had miraculous recoveries, despite a doctor’s prediction. (Such stories are one reason doctors hate to make predictions.) But the sort of cases I’ve written about are those where all treatment has failed and the patient faces death soon. When applied to a patient in the last stages of a terminal decline, CPR is particularly ineffective. A 2010 study published in the journal Supportive Care In Cancer looked at terminal patients who wanted no CPR but got it anyway. Of the 69 patients studied, eight regained a pulse, but, 48 hours later, all were dead. Well-meaning CPR advocates talk in terms of “survival,” but all the term means is that the heart again beats on its own. In the above example, survival was 11 percent, but “survival” as often understood by the public—regaining a reasonable quality of life—was zero.
We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.
Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC. This post was originally published at Zócalo Public Square, a non-profit ideas exchange that blends live events and humanities journalism.
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.
How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.
To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.
The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.
But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.
Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.
Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.
It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.
Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.
But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.
Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.
We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.
Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.
Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC. This post was originally published at Zócalo Public Square, a non-profit ideas exchange that blends live events and humanities journalism.

Tuesday, June 10, 2014

The Voice of One

This is the only time I can remember writing on a topic that has nothing to do with Parkinson's, though it does address an "illness" of another sort. 

I watched a DVR recording of the latest in the new "Cosmos" series this morning.  They played a recording of Carl Sagan sharing reflections from his book, A Pale Blue Dot, based on seeing a photograph of earth taken from the Voyager satellite before it exited our solar system years ago.  Here is what he said:

A Pale Blue Dot

This excerpt from Sagan's book Pale Blue Dot was inspired by an image taken, at Sagan's suggestion, by Voyager 1 on February 14, 1990. As the spacecraft left our planetary neighborhood for the fringes of the solar system, engineers turned it around for one last look at its home planet. Voyager 1 was about 6.4 billion kilometers (4 billion miles) away, and approximately 32 degrees above the ecliptic plane, when it captured this portrait of our world. Caught in the center of scattered light rays (a result of taking the picture so close to the Sun), Earth appears as a tiny point of light, a crescent only 0.12 pixel in size.
Look again at that dot. That's here. That's home. That's us. On it everyone you love, everyone you know, everyone you ever heard of, every human being who ever was, lived out their lives. The aggregate of our joy and suffering, thousands of confident religions, ideologies, and economic doctrines, every hunter and forager, every hero and coward, every creator and destroyer of civilization, every king and peasant, every young couple in love, every mother and father, hopeful child, inventor and explorer, every teacher of morals, every corrupt politician, every "superstar," every "supreme leader," every saint and sinner in the history of our species lived there--on a mote of dust suspended in a sunbeam.
The Earth is a very small stage in a vast cosmic arena. Think of the rivers of blood spilled by all those generals and emperors so that, in glory and triumph, they could become the momentary masters of a fraction of a dot. Think of the endless cruelties visited by the inhabitants of one corner of this pixel on the scarcely distinguishable inhabitants of some other corner, how frequent their misunderstandings, how eager they are to kill one another, how fervent their hatreds.
Our posturings, our imagined self-importance, the delusion that we have some privileged position in the Universe, are challenged by this point of pale light. Our planet is a lonely speck in the great enveloping cosmic dark. In our obscurity, in all this vastness, there is no hint that help will come from elsewhere to save us from ourselves.
The Earth is the only world known so far to harbor life. There is nowhere else, at least in the near future, to which our species could migrate. Visit, yes. Settle, not yet. Like it or not, for the moment the Earth is where we make our stand.
It has been said that astronomy is a humbling and character-building experience. There is perhaps no better demonstration of the folly of human conceits than this distant image of our tiny world. To me, it underscores our responsibility to deal more kindly with one another, and to preserve and cherish the pale blue dot, the only home we've ever known.
-- Carl Sagan, Pale Blue Dot, 1994

I have bolded comments Sagan made that were still ringing in my ears when I heard a news report that there has been yet another shooting incident, this time at a high school in Oregon.

My reaction was probably the same as every other caring human being.  Why do these things keep happening?  What is wrong with our world?  How can we put an end to this madness?

What can I do as one small piece of this giant puzzle?  What good is the voice of one (crying in the wilderness)?

Then I realized that what I can do is speak up and say "I've had enough!" and that I have a platform of sorts to do so.  This inconspicuous blog has been visited by over 11,000 people in 60+ countries around the world.   I can't put a stop to this, but WE can. 

Not that it will be easy.  It hasn't gotten this way overnight.  Witness Genghis Khan, Alexander the Great, Joseph Stalin, Hitler, Al Qaeda, our own Civil War and countless other individuals and groups throughout history.  But don't stop there.  Think about the mindset that has evolved right here in our own back yard.

The process has been insidious and has occurred on a grand scale.  Our own country has become divided along ideological, political, gender, class, and other lines that have created a level of animosity and angst beyond anything I have experienced in my sixty five years.  Worse than that, we have come to believe these feelings are justifiable!  "How fervent their hatreds!" Sound familiar?

The bad news is that we have allowed this to happen.  Our political "leadership" (and this refers to both parties, by the way), instead of talking about strategies for working together for the common good, too often has inundated the public with deceitful campaigns designed specifically to create these divides.  Not only have many of us "taken the bait", developing calcified points-of-view, but we exacerbate the problem by sharing these with other members of our chosen "herds" via social media and other communication.  So disdain, if not outright hatred, has become acceptable and the "new normal".

And this is only part of the problem.  There has been a lot of talk about deterioration of families and "family values".  Marriages that produce children are ending, too often, in divorce at an alarming rate, creating confusion in children's minds and lives (in some cases, not all) that lay an unfortunate foundation for too many troubled adults.  Even when there are two parents, how many of us are taking the time from lives filled with so many competing wants and priorities to implant values in our children that will help them discern right from wrong in the future?

Though I believe that faith can play a crucial role in all of this, I will say that I know families who instill positive values in their children but are not "people of faith".  At the same time, I see other families who make faith an important part of their lives that experience benefits that I would wish for any individual or family.

I am talking about "foundational" values that provide a "true north" for all of us.  Not that we always stay on target, but when we stray, we know it.  These values can be instilled by parents, family, church, schools, friends, and more.

Other factors have been discussed, including the level of violence children are exposed to through media, video games, and more.  My feeling is that children that are armed with a strong foundation will grow into adults who will, at least, know right from wrong. 

Please understand that I don't pretend to have all the answers, but I feel compelled to try to initiate a dialog that will lead to positive change.  Each one of us has to do our part to turn the tide.  Here are some things that I plan to do:
  1. Continue to try to model for my family, however imperfectly, love for others and willingness to hear, without disparaging, other points-of-view.
  2. Have the courage to speak out to say something is wrong when it seems appropriate.
  3. Have the wisdom to keep my mouth shut when that is appropriate.
  4. Take my obligation as a U.S. citizen seriously when considering which candidate will provide the leadership this country needs and a positive framework of mutual respect and forbearance.


Thursday, June 5, 2014

LBDA WEBINAR: Living with LBD: The Firsthand Perspective


LBDA Webinar: Living with LBD: The Firsthand Perspective aired yesterday and can now be viewed on youtube at  The goal of the webinar was to share information about Lewy body dementia, the form of dementia that is most common with Parkinson's (PD) patients.  

LBD is the second most prevalent form of dementia (after Alzheimer's).  While there are similarities to AZ, there are also significant differences.  Cognition issues including dementia are one of the PD non-motor symptoms that are often more problematic for patients than the better-known motor symptoms. For most PWPs (persons with Parkinson's), relatively mild cognition symptoms can be experienced early in the disease.  These symptoms remain mild for some, but others it progresses to a condition called mild cognitive impairment (MCI) that is characterized by issues such as impaired executive function and working memory, problems with multi-tasking, slower processing and retrieval of information, impaired concentration and problem solving.  These symptoms can improve or remain the same, but for many they progress to the point where they are interfering with activities of daily living (dementia).  In some cases, more advanced symptoms start around the same time or earlier than motor symptoms, which is dementia with Lewy bodies (DLB).  More often, these advanced symptoms start a year or more after onset of motor symptoms, which is Parkinson disease dementia (PDD).

Linda and I participated to provide feedback regarding the ramifications of my having an MCI diagnosis in conjunction with PD.  Another couple provided the perspective of his LBD diagnosis, including the difficulties encountered in getting an accurate diagnosis.