Thursday, August 7, 2014

Update on the response to Window of Opportunity


I am happy to report that Window of Opportunity is on the recommended reading lists for the Parkinson Disease Foundation, National Parkinson Foundation, Michael J. Fox Foundation, and the Lewy Body Dementia Association.  Below is an updated list of responses received to date:


Reader Comments 

"This book by Kirk Hall with a forward by Benzi Kluger, M.D. offers a real-world honest and helpful window into the life of a Parkinson's disease patient who is experiencing cognitive challenges.  There are many useful tips, and also many great stories that will provide comfort to both Parkinson's disease patients and caregivers.  This is just terrific and a really important contribution to the literature.   I highly recommend the book."

Michael S. Okun, MD
Medical Director, National Parkinson Foundation 
Professor of Neurology
University of Florida

Kirk Hall delves into the frightening possibility of developing dementia as his Parkinson’s disease progresses. Candid, insightful, and forward-thinking, Kirk demonstrates through his book and his advocacy that cognitive impairment in Parkinson’s disease is not an end to life, but simply a turn in the road that must be negotiated and accepted, but not surrendered to. Window of Opportunity is a must-read for anyone concerned about cognition in Parkinson’s."

Angela Taylor
Director of Programs
Lewy Body Dementia Association
 

“I just opened the first chapter about 2 hours ago and couldn’t stop….I just finished it. It is an excellent book!” 

Carol J. Walton
CEO, Parkinson Alliance

"Window of Opportunity" is a unique, first-hand account of the "in between time" that comes upon acceptance of a diagnosis and before succumbing to an illness. This thoughtful, unflinching narrative explores the author's journey from his diagnosis of Parkinson's disease in 2008 through his research into the mysterious threat of cognitive dementia in his future.

When my mother was diagnosed with Lewy body dementia, I searched for a book like ‘Window of Opportunity.’ It is a touchstone for those struggling with a dementia diagnosis and the people that love and care for them.” 

Leigh Ramsey
Daughter who lost her mother to LBD

“Initially I was apprehensive about reading the book, Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia by Kirk Hall. I was afraid that the book was going to focus on the uncertainty and threat of dementia that sometimes accompanies Parkinson’s. I was delighted to see that there is no gloom and doom in this book.

Kirk was courageous to tackle these sensitive topics. When he expressed his fears, it helped us to articulate and accept our own concerns and worries. We are no longer alone on this treacherous path.

Kirk’s writing style is personal and honest like a memoir, and also filled with factual information and stories about Parkinson’s and dementia. He is determined to erase the stigmas of these two diseases in our society.
Kirk demonstrates that we can have a meaningful, purposeful life, despite Parkinson’s, dementia or whatever maladies come our way. His book was inspirational and motivated me to move upward and onward. I highly recommend it.”

Kate Kelsall
Co-Founder and President of DBS Voices of the Rockies,
Co-Founder and Co-Leader of the Bionic Brigade DBS Support Group
Parkinson’s blogger: Shake, Rattle, & Roll 

“Just finished reading the manuscript and can truly say what a wonderful book this will be for so many people…PWP, family members, caregivers. It was an easy read, honest, ‘story like’ which, for me, lends itself to being a page-turner. You could truly hear your voice, the passion and desire, to help educate others.”
 
Cheryl Fortunato
Daughter of an LBD patient

Your book is an excellent piece of work. I particularly enjoyed reading about your history and your approach to handling the difficult things God has allowed you and your family to face.  The chapter on faith was inspiring and very humbling. I can only imagine how useful this book will be to a large number of folks who are facing similar situations.”

Rich Carnahan, Ph.D.
Stephens Minister
Retired Aerospace Engineer

“Window of Opportunity is the story of one person’s journey through the initial signs of cognitive impairment brought on by Parkinson’s disease and the uncertainty of a future that might include dementia. Kirk Hall, only 58 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor.  He describes the long and seemingly endless visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the progression of his disease. His copious notes on his symptoms and mental state allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties.  He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia.  It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how a potentially disabling diagnosis can be a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on the path.”

Diane Cook
Leader, LEAP Parkinson's Support Group
People with Parkinson's Advisory Council, Parkinson's Disease Foundation
Colorado State Director, Parkinson's Action Network
Senior Patient Advocate, ProjectSpark Foundation

“When Jim and I met Kirk Hall at a Parkinson’s conference in Colorado, we were impressed with his obvious intelligence and knowledge. When I read his book, that was confirmed, but most of all, I was impressed with his courage and determination. Like others facing dementia, he found himself alone. Even his wife could see only the positives at first. Yet, he motored on, seeking a diagnosis that fit his symptoms. In the meantime, Kirk’s book shows that he did all of the physical things that help to keep dementia at bay—things like exercising, yoga, eating right and decreasing stress. But he did more. He moved closer to his grandchildren, increased his focus on spirituality and reached out to others, teaching and sharing. And then he started writing, joining that small group of men like Dr. Thomas Grayboys, Rick Phelps and Charles Schneider who tell about dementia from the inside out. As caregivers, Jim and I can only write about dementia from the outside in. We join all dementia caregivers in our gratefulness to men like Kirk who give of their very soul as they tell us what it is like to feel dementia encroaching. Thank you, Kirk, for your heartfelt story. We recommend it to not only all PD and LBD caregivers, but to the medical community as well.”

Helen & James Whitworth
Authors, A Caregivers Guide to Lewy Body Dementia

“I was impressed by the amazing relationship that you have forged with Dr. Kluger, one more akin to a relationship of equals than I have ever witnessed between a doctor and a patient.  This is a tribute to both you and Dr. Kluger.  I sincerely hope that you have many years ahead of you to write, speak and contribute to the Parkinson’s community.  I also send my best wishes to Dr. Kluger with respect to his exciting new venture in establishing what is, to the best of my knowledge, the first palliative care clinic devoted to PWPs in the country at the University of Colorado Hospital.”

Valerie Graham
Co-Founder Bionic Brigade DBS Support Group



Order in book format at http://www.pygmybooks.com/BuyBooks.html (page 2) or amazon.com. 

Order in ebook format at amazon.com (kindle).

Tuesday, August 5, 2014

PATIENT-CENTERED RESEARCH INITIATIVES

PCORI

During October 2013 I posted an article on highlights from the recent World Parkinson Congress (WPC) in Montreal.  Here is a segment of that article:

We (Linda and I) arrived on Saturday before the Congress started in order to participate in the Parkinson Disease Foundation (PDF) Parkinson Study Group (PSG) meetings.  There are seven different research groups that address a variety of different PD categories.  This year for the first time, we were invited to participate along with other PAIR (Parkinson Advocates In Research) members to provide "patient input".  We sat in on the Neurosurgical group and Cognitive/Psychiatric group meetings and appreciated the opportunity to interact with doctors and researchers from all over the U.S.

This new development is part of movement toward more patient engagement in the PD world.  It is encouraging for PWPs like me that there is a recognition of the value of including patients in the research process as well as placing an emphasis on patient-centered approaches to medical services.


This new direction in healthcare, which was very exciting for many of my fellow PWPs who had campaigned for the medical community to place greater emphasis on the value that can be provided by patients and caregivers, apparently flowed out of the patient-centered outcomes provision of the Affordable Care Act that became law in 2010.  As a result, the Patient Centered Outcome Research Institute (PCORI), was established in late 2010, and made research grant funding available consistent with their mission statement:

The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.

PDF works closely with PCORI in conjunction with it's PAIR program.  A PWP friend and PAIR colleague in the Denver area, Diane Cook, who is also a member of the PDF People with Parkinson's Advisory Council, established a new program with Dr. Benzi Kluger,  head of the University of Colorado Hospital (UCH) Neurology department, that is being funded by a PDF grant.  The program involves Denver area PAIR associates working with UCH neurology researchers for a 1-year period in order to evaluate objectively the value of patient participation in research.

I have the honor of working with my doctor, Benzi Kluger, (who kindly wrote the foreword for my book, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia, on the planning and implementation of a patient-centered clinical research project that will focus on the PD palliative care process.  It is hoped that this will lead to identification of specific, actionable opportunities to improve patient care and quality of life for PWP's, caregivers, and their families starting at diagnosis and ending with the death of the patient.  A patient advisory council has been established to provide input throughout the research planning and implementation process.  I will provide more information about this project in the future.



UPCOMING PD EVENTS IN THE DENVER AREA

Coming up in August....

Two-part series on Cognitive Changes and Issues in Parkinson's Disease.

Held on two consecutive Wednesdays (August 13 and August 20) from 2:00 PM-4:00 PM, these lectures feature fellows from the movement disorders program at the University of Colorado.

Session I - Cognitive Issues in Parkinson's Disease: Background and Definition
Andreas Michas-Martin, MD, University of Colorado Fellow

Session II - Cognitive Issues in Parkinson's Disease: Testing, Treatment and Current Research
Samantha Holden, MD, University of Colorado Fellow

WHERE: Atria Inn at Lakewood, 555 S. Pierce St., Lakewood, CO 80226
The event is FREE, but registration is required. Registration closes August 11, 2014
Contact : info@parkinsonrockies.org or (303) 830-1839



Speech & Swallowing Changes in Parkinson's Disease

These lectures will feature 2 speech therapists to discuss communication and swallowing problems associated with Parkinson's disease.

Lecture 1
Voice and Speech Changes in Parkinson's Disease
Angela Halpern, MS, CCC-SLP

Lecture 2
Tips and Tricks for Swallowing Problems
John Dean, MA, CCC-SLP

WHEN: Thursday, August 28, 1:00-4:00pm
WHERE: Frasier Meadows, 350 Ponca Pl., Boulder, CO 80303
The event is FREE, but registration is required. Registration closes August 26, 2014
Contact : info@parkinsonrockies.org or (303) 830-1839


Incidentally, these programs will be telecast to the Durango support group on Tuesday, August 26. There may eventually be a recording of these available online...

Michael J Fox Foundation Coming to Denver! PART I

In September, the Michael J Fox Foundation will visit the Movement Disorders Program at the University of Colorado. This is a daylong event (9-4:00 PM) featuring lecturers from the University as well as from the Michael J Fox Foundation. Marketing is just getting underway but I've attached a "save the date" flyer. Space may be somewhat limited so if you're interested, I would get in contact with them as soon as possible. The contact person is Sarah Rogers (Sarah.Rogers@UCDenver.edu).

E3 Conference with the Parkinson Association of the Rockies

On Friday, October 17, the Parkinson Association of the Rockies will be hosting their second "E3" conference. E3 stands for "Educate, Empower and Energize" and this year's program features a mix of panelists and presenters. The featured guest this year is John Argue (www.johnargue.com), author of "Parkinson's Disease and the Art of Moving" (available at Amazon http://www.amazon.com/Parkinsons-Disease-Moving-John-Argue/dp/1572241837). John Argue approaches elements of the disease by drawing upon his background in theater, which gives him a very unique perspective. He is a highly sought-after presenter and always a crowd pleaser. This program is tentatively set to be held at the Doubletree in Westminster, which should make it more accessible to some folks up north. I highly recommend you put this date in your schedule so you don't miss this fabulous program.

http://www.parkinsonrockies.org/community/event-calendar/icalrepeat.detail/2014/10/17/2301/-/e3-conference-educate-empower-energize

Michael J Fox Foundation Coming to Denver! PART II

Finally, there is a tour associated with the Michael J Fox Foundation, who have partnered with Abbvie Pharmaceuticals (manufacturer of the soon to be approved in the US duodenal pump system, DuoDopa"). The program, called "Partners in Parkinson's" will be another daylong event, held at the Denver convention center on Saturday, November 8, 2014. The program will feature speakers from the Michael J Fox foundation and beyond, including content from Colorado's own, Davis Phinney Foundation for Parkinson's.
For more information, visit their website...https://www.partnersinparkinsons.org
specific information about the Denver event is available here (be sure to scroll to the second page).

https://www.partnersinparkinsons.org/attend-an-event#upcomingEventsAnchor

Friday, July 18, 2014

Vote For Parkinson Association of the Rockies!


12th Annual Vitality Walk - Longmont

VOTE FOR PARKINSON ASSOCIATION OF THE ROCKIES!!!!!!!!!!!!!!!!!



     Hi, this is a little virtual fundraising competition for the Parkinson 

Association of the Rockies. They are our scrappy little hometown Parkinson’s 

advocacy organization serving Colorado, Wyoming and beyond. They are not 

affiliated with any of the national organizations and as a result, they spend 

all of their money in our region.

     
     Please take a minute to vote for them in this contest. There’s no cost 

involved and you’d be doing a great organization a little favor (and if they 

win, they said that they’re going to bring a Rocksteady Boxing Program for 

Parkinson’s to Colorado, which would be excellent!!!).
     
    You can visit the contest here!

     The contest is over on Monday night at midnight so take a moment to 

vote for them right now.  There are additional prizes for the group that 

gets the most increase in Facebook likes so be sure to visit PAR’s 

Facebook page and “like” them-you can get there by visiting 

https://www.facebook.com/PARockies

Saturday, July 5, 2014

Are You A Parkinson's Warrior?


Life Care Centers of America


Join us for a day of high-intensity, Parkinson's-specific exercise featuring physical, occupational and speech therapists from the Parkinson's Network at Life Care Centers of America. Our Parkinson's warriors will be attacking PD from all angles by addressing not only physical elements but also incorporating voice, cognitive and fine motor exercises into a comprehensive program.

There are three daylong sessions starting in August. Choose a session near you or go to all three!

Friday, August 8, 2014 in Longmont, Colorado - Contact Hope Engel PT DPT (303) 776-5000

Friday, August 22 in Aurora, Colorado - Contact Meredith Roberts PT DPT (720) 863-1075

Friday, October 10 in Littleton, Colorado - Contact Stella Mahoney PT DPT (303) 798-0614

Preregistration and a prescreening visit is required to participate in this unique event. Contact each location directly to schedule an appointment (however, if you get screened for one event, you will be approved for all three).


John Dean MA CCC SLP
Parkinson's Program Coordinator/Mountain States Division
Office 303-684-5755/ Cell 303-532-6209/ Fax 303-684-5699
Email:  John_Dean@lcca.com

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.