Thursday, January 28, 2016

Review: Being Mortal: Medicine and What Matters in the End by Atul Gawande

Dear Lit Loves,

Greetings!  I've been in rapid-fire reading mode when it comes to newly released memoirs.  I decided to read Being Moral:  Medicine and What Matters in the End by Atul Gawande.  Lately, I've found myself gravitating toward medical memoirs whether it be a book chronicling a strange medical diagnosis, personal palliative care experiences, or doctors ruminating on the fragility of life.  Dr. Gawande is a surgeon at Brigham & Women's Hospital, a writer for The New York Times, and a professor at Harvard Medical School and the Harvard School of Public Health.  Naturally, I was intrigued by what this well-trained doctor thought matters most when he encounters a patient facing a finite amount of time left to live. 

First,  Dr. Gawande readily admits that most doctors are hard-wired to overcome; to push for success in recovery, to fix and heal a patient no matter what.  There is a realization though that there may come a time in a patient's life where pushing for healing and cure may have its limitations.  With all the technology available today, it seems our medical culture is in a constant state of treating in a never-ending fashion when what might be best to do is to think seriously, especially when a patient is facing a terminal diagnosis, about what really matters to that patient at the end of life.  It's the brutal reality most patients and families live in denial about:  we are are born and we all will someday die.  No, it's not a hot topic of conversation at the family Christmas dinner, but truly, we all should give it serious thought and make our wishes known about how we wish to live in the last years, months or days of our life. 

Next, Dr. Gawande speaks about how most assisted living centers and nursing homes are really set up not to allow a person to continue to live in a meaningful fashion, but to basically assure families that their loved ones are being monitored and are safe.  Most assisted living centers and nursing homes I've visited are quite institutionalized settings.  You may have to share a room with someone.  You may go from living in your own home to living in an unfamiliar place having to follow a schedule that is not of your own choosing, but rather what makes everything run efficiently for the assisted living center or nursing home.  Now, there are centers where a person can maintain their own apartment, decide how they wish to spend their day, and pursue what they wish to accomplish on a daily basis whether that's a game of cards, reading in the library, taking a trip to a theatrical performance, or visiting with family and friends.  And sometimes the children of an elderly person may decide that when it becomes too much for them to help with a parent's care, they want to find a place where their parents can reside that ensures someone else is monitoring the parent, giving medications, providing meals, and attending to falls.  Sometimes when an older parent finds him/herself moving to an elderly living facility, it's really to give their children peace of mind as opposed to what might allow the elderly parent to maintain a sense of meaning and dignity and purpose in the latter years of their lives.

 And then there is the palliative care movement which most people associate with Hospice, but I have learned that even hospitals have palliative care units as well.  Most people are scared to death of palliative care because the automatic thought is okay, I'm there to die.  I had one friend who refused to visit her grandmother in a Hospice facility because she was too scared of encountering a "house of death".  Wow.  I totally see it differently than my friend.  I see it as a place where you can go, have your own independent bedroom and live out your final days on your own terms.  A place where you don't have to continue suffering the side effects of chemo or radiation treatments, but you can enjoy whatever time you have left on your own terms and without pain.  My father opted for in-house Hospice during his final days of life and I found it much more peaceful than the Intensive Care Unit of the hospital.

Finally, what I liked about this book is that Dr. Gawande speaks about the "hard conversations"we all need to have with our doctors, ourselves, and our closest loved ones.  And it appeared that he learned how to broach these hard conversations with patients via a palliative care nurse who was well-trained in helping families sit down and talk about what matters to a person at the very end of life.  It may not all be resolved or determined in a single conversation; it may take several conversations.  Essentially, as a doctor or palliative care nurse you ask the terminal patient ( with family present) the following questions:

1)  What do you understand is your diagnosis and what is happening to your body? 
2)  What are your greatest fears in the coming days?
3)  What would be your goals for your life should your condition continue to deteriorate?  Do you want to keep treatment going until the time of death?  Do you want to be intubated if necessary and placed on a ventilator?  Do you wish to continue to have more surgeries or radiation?
4)  What would you be willing to sacrifice to keep on living?  One woman realized her father wanted to keep on living only if he could continue to eat chocolate ice cream and watch sports on television.  She was most shocked because she thought he would not be willing to endure leg paralysis which was a possible side effect of the difficult surgery he was to decide upon; however, he told her that even if both legs were paralyzed and he was assured he could still eat chocolate ice cream and watch sports on television, he was willing to go ahead and proceed with the surgery.

I guess the most important points I took away from reading this book included:  have I thought about my own mortality?  Have I thought about a terminal diagnosis and what treatments, if any, would I wish to endure and for how long?  Would I want to be kept alive on a ventilator and feeding tube?  What kind of resuscitation efforts would I want from doctors,nurses, and hospital staff if my heart suddenly stopped beating?  And then I remembered that I had also completed a task that so many folks avoid and live in denial about:  I had completed a living will; I had completed who I want as my healthcare power of attorney; I have had an attorney draw up a will for me; and I have had the hard conversation with my loved ones about what my wishes are when I do take my last breath.  And that somehow gives me a sense of relief; a sense that I will have steered the boat to its final docking point; and that my loved ones will not have to sit and lament what I would want for myself in my final months, days, and hours.  I guess the other important point I took away from this book is:  have you and your loved ones thought about what you want for yourselves when you are in the home stretch of this marathon we call life?  And it's one hell of an important and thought provoking inquiry.  The worst thing a person can do is avoid the thought of mortality and communicating what they think to their loved ones.  I can tell you that that produces a gut-wrenching and traumatic situation for loved ones and it's not a pretty place in which to find yourself.

Yes, I would highly recommend this book.  It gives you a lot to think about and makes you think consider what gives meaning to your life, what's important to you in your final moments of life, and have you sat and discussed these important decisions with your own family and loved ones.


Tuesday, January 26, 2016

Dear Literary Agent Who Is Acquiring Memoir: You Just Blew It With This Writer

For this post I'm just going to say I have been most disappointed in quite a majority of literary agents who look to represent writers in the memoir/personal narrative/inspirational genre.  Today, I had a most impersonal response from a highly esteemed memoir literary agent.  I had written a polite personal note and included the query for my most recent inspirational memoir manuscript.  Actually, I had even connected with two authors this literary agent already represents.  So I had done my research and her response in relation to my personal note and query was, wait for it, "Sorry, I'm not".  For a minute I just sat staring at my laptop in stunned silence.  That's it?  No other information was included except that the email was sent from his/her iphone.  I mean, I realize as a literary agent that you are always busy, inundated, and most likely overwhelmed, but "Sorry, I'm not" is the best response you can give to someone who was genuinely attempting to show that they knew about your acquisitions in the memoir genre, had been in contact with two of your authors, and as a writer I was contacting you because an editor was interested in acquiring my work?

  I'll be honest dear readers, I thought it was quite rude. And I just have to say that it has made me think twice about ever purchasing any books this particular literary agent is associated with because that's what happens in today's world folks.  A literary agent can make or break you as an author, particularly to those of us who are trying to climb the ladder and become published authors, too.  Because now I really don't wish to purchase anything represented by this literary agent.  And when other aspiring writers ask me about this literary agent when they discuss the querying process, I'm going to be quite blunt and say exactly that I found him/her to be quite impersonal and rude.  Frankly, her response was dismal at best and unprofessional.   Professionalism counts not just for aspiring authors and already published authors, but also when it comes to how you handle yourself as a literary agent, editor, intern, assistant, or office manager.  So the lesson for today is:  You are making an impression with each and every response you send to a writer or anyone else for that matter.  And I would always advise not biting the hand that feeds you.   Cause we aspiring authors do buy books and we do have a choice as to which books we buy.  Here's the thing dear literary loved one:  You may think me a little fish now, but I know other little fish, medium-size fish, and marlins and they are always asking me about what I am reading, what reading material I am purchasing, and what my experiences have been like with the publishing world.  And one day this little fish may or will become a marlin.  And this potential marlin has a long memory and no respect for people who are rude, impersonal and unprofessional.  And remember folks, even J.K. Rowling was a little fish once as well.  I hear she's doing rather well now, though.  Hey, there's someone who can be inspiration for us all!

Till my next update,

Sunday, January 10, 2016

Review: Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care by Marty Makary

Dear Lit Loves,

Greetings!  I just finished reading a fascinating narrative nonfiction work by a pancreatic surgeon  who essentially is blowing the whistle when it comes to U.S. Health Care.  I was particularly drawn to this book because I feel that the loss of my father most recently was a direct consequence of negligence and medical malpractice on the part of a novice oncologist; therefore, I wanted to see what a doctor, and especially a surgeon, or someone on the inside had to say about it and I was not disappointed. 

First and foremost, the book entitled Unaccountable:  What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care is written by pancreatic surgeon Dr. Marty Makary.  Essentially, he details that you need to shop around for the best hospital, doctor, surgeon, etc. just like you would if you were buying a  house or car.  In other words, do your homework because this is your life we're talking about, okay?!  Many people, includng ones I know, assume that any doctor with an M.D. knows best.  Oh, hell to the no is what I say.  Not every doctor graduated at the top of their class and not every hospital runs like the Mayo Clinic.

So what does Dr. Makary see as the chief problems with our U.S. Health Care today?  First, he defines two types of doctors:  diagnosticians and proceduralists.  The diagnosticians get to the root of the medical problem; what is the specific health issue or crisis you are experiencing?  Proceduralists are the doctors that specialize in treating your specific diagnosis or health issue.  We have doctors who are conducting colonoscopies, but they are not trained in the latest or more advanced ways of removing large polyps.  If this type of doctor discovers a large polyp in your colon and he doesn't know how to remove it right then and there while your out cold for the procedure, you may wake up only to be told you will need another procedure to remove the polyp via an open surgery whereas it could have already been removed during the colonoscopy and sent for a biopsy.  More procedures quite often equals more greenback for hospitals and doctors.   I was appalled to learn that hospitals can charge what they want for chemotherapy drugs used to treat cancer patients.  Say What?!  Yes, according to this book, this is true.

And then we have the doctors with the abrasive communication styles and arrogant manners.  When I encounter one of these types of docs, I get up and leave.  I have neither the time or patience for this type of medical personnel and most often, I'll report it to the hospital as well.   Next, the author brings attention to the "Never Should Happen" instances in medicine such as when a doctor leaves an instrument or cloth inside a patient during a surgery.  And here's the big itch:  hospitals are not required to tell you, the consumer, how often this happens in their hospitals or the doctors with whom it happens the most!  Outrageous!  Finally, there is the pervasive hospital culture of no one speaking up when mistakes are obvious.  In other words, someone on the hospital's staff sees improper practice or care and is afraid to bring it to a doctor's attention for fear of being fired. 

And if you really want to know which hospital is the best and which doctors are the best, guess who you should ask?  The people that work at the hospitals and with the doctors.  Dr. Makary speaks about what should be happening in today's healthcare facilities today so we as consumers know where to go for a specific illness or which hospital has the most frequent readmission rates or infection rates.   All this type of data should be available to consumers, but it's not.  And it doesn't sound like administrators at hospitals want this information made available to patients because they would have to be held accountable for the losses that might occur should patients see this kind of information and choose to take their business elsewhere. 

Honestly, I personally have asked a trusted specialist at any major university hospital where I receive treatment, if your daughter or son had this illness who would you choose as a specialist to treat it?  Know what? Most every time, the specialist has told me who they would entrust with the treatment and what doctor to not go near in terms of treatment.  That's it.  Ask the nurses, physician assistants, nursing aids, and hospital staff the following:  Would you have a surgery at the hospital where you work?  Would you feel comfortable speaking up if you witnessed something going wrong with a patient's care or treatment?  And on a scale of 1 to 10, where would you rank your hospital staff in terms of teamwork?  This kind of information should be available to consumers on every hospital website.  And let me just add that I always advise getting a second opinion when you receive a dire health diagnosis.  If a doctor has a hissy fit about you getting a second opinion then you don't want him/her treating you in the first place.  If they truly know their practice and are exceptional in their field, they will welcome or even encourage you to get a second opinion.

Most of what Dr. Makary writes about regarding U.S. Health Care, I find myself saying, "Amen!" I will say though that I disagree with him that local hospitals are better than large, famous ones.  Not in my experience.  I've watched a local cancer center oncologist fail to get my father proper antibiotic treatment and hospitalization following a serious case of pneumonia.  My father was also a two time survivor of a rare lymphoma and had a seriously compromised immune system.  She should be held accountable in my opinion.  And yes, I believe in suing to the highest dollar if a doctor is negligent in the care of a patient and that neglect gives direct rise to a patient's death.  And if the hospital hired that doctor then they too should be held monetarily and publicly accountable most definitely.  Also, I watched recently when a beloved member of my home church congregation went for a week not being able to speak and generally feeling unwell.  She went to see her primary care doctor, an ENT, and also landed in a local hospital's Emergency Room only to later die because no one recognized the signs that she was experiencing a stroke.  So no, I won't be going to that local hospital out in the boonies for any kind of treatment anytime soon I assure you.  On that recommendation, I disagree with Marty Makary.

This book was a great read.  It will really open your eyes as a consumer to what drives U.S. Health Care.  It will also advise you on what to look for in a doctor or surgeon, questions to ask, and encourage you to ask hospital personnel what they think of where they work.  On a 1 to 5 scale, I rate this book as a 4 or definitely put it on your "to read" list; it just might save your life or the life of someone you love.

Till my next update or review,

Saturday, January 2, 2016

North Carolina: Be Careful Where You Receive Your Cancer Care

Dear Lit Loves,

I am taking an opportunity to pause on the memoir reviews I usually write about on this blog as well as the updates I frequently give regarding the insanity of attempting to become a published author in today's traditional publishing world.  As most people know I write about real life, real people and very real experiences.  I especially want to devote this blog post to people and cancer patients in North Carolina.  Unfortunately, I have lost two incredibly wonderful people recently not only to cancer, but also because of substandard cancer care.  Both individuals who died were treated at the same cancer center and both suffered the dire consequences of oncologists who made poor judgement calls and a cancer center run by administrators who are more interested in their "excellent" reputation and bottom line rather than putting cancer patients' needs and care a priority..

First, I cannot stress enough how important it is when you receive a cancer diagnosis that you make sure you ask for a copy of your CT/MRI/PET scans and biopsy reports.  You and your insurance company paid for them and you rightly deserve a copy.  Do not be afraid to obtain a second opinion from another oncologist regarding your specific type of cancer, options for treatment and a precise understanding of what stage your cancer is.  These are vitally important pieces of information you need to have to make a wise decision regarding your treatment as a cancer patient.  Never be afraid to question any oncologist or to conduct research to find an oncologist that has a stellar reputation, experience and treatment outcomes for your specific type of cancer. 

The first case example I'm going to discuss is a friend and former colleague of mine who began experiencing distressing digestive symptoms and suddenly one night found herself on the floor of a bathroom in serious pain.  She called 911 and was rushed to the nearest hospital.  It was discovered that she had a grapefruit size tumor in her colon that had actually broken through the colon wall and spread to an ovary.  She received immediately surgery to remove the tumor, the ovary where the tumor had spread and a resectioning of her colon.  She was in the hospital for three weeks for recovery.  When the biopsy or pathology report was finally revealed to her, she learned she had a very rare type of cancer that is highly aggressive.  Initially, her oncologist thought she would need no further treatment; however, when he presented her case to other oncologists he was informed that he better jump on treating this aggressive form of cancer via chemotherapy.  My friend and former colleague successfully completed multiple rounds of chemotherapy and was able to return to work.  Unfortunately, her oncologist did not conduct proper follow up visits with her and monitor her for recurrence of the cancer.  She had no CT/MRI/PET scans following initial remission over a nine month period.  As far as I know, a patient with her type of aggressive cancer should be monitored with scans every three months for a year once a patient achieves intial cancer remission.  Nine months later my friend and former colleague calls to tell me that she thinks she has a stomach bug and she is having extensive difficulty with her visual acuity.  I asked her what her latest scan had shown.  She asked me, "What scan?"  I was horrified to learn that her oncologist had not given any follow up scans to monitor her cancer after its initial remission.  In other words, the oncologist let her fall through the cracks.  By the time her primary care doctor sent her back to the oncologist when the stomach bug did not go away, a CT scan was finally performed and her rare cancer had returned.  And it had spread throughout her colon, liver, pancreas, rectum and four tumors were found in her brain causing the vision problems.  I urged her to go to a major cancer hospital in our state where doctors were well-versed in treating her type of rare cancer.  She chose to remain with the oncologist who allowed her to fall through the cracks.  He never leveled with her about how much time she had left to live even when she asked him for that information.  She had a right to know that information.  My friend and colleague died seven months later due to how pervasive the cancer had spread and the fact that it was so advanced at the time it was once again discovered that there was no treatment her oncologist found that would cure her. 

In 2015 my dad returned to the same cancer center for a third recurrence of a rare lymphoma.  He had been diagnosed in 2002 and treated successfully with six rounds of chemotherapy and monitored closely for recurrence of the cancer via scans.  In 2010, a scan that my dad had discovered the lymphoma had once again returned and this time it would require a stem cell transplant.  We had that stem cell transplant done at a cancer hospital that is well-known for its success with stem cell transplants.  Dad's stem cell transplant proved successful.  Last January in 2015 dad's lymphoma symptoms once again returned.  Fortunately, he had a veteran oncologist well-trained in the type of rare lymphoma my dad had.  It took the cancer center two attempts at a biopsy in order to reach the area where the lymphoma could be found.  This delayed his treatment.  Additionally, our family learned that my dad's veteran oncologist was leaving this local cancer center.  New hospital management had arrived in recent years and my family and I noticed many well-trained and experienced oncologists leaving the cancer center.  Now, my dad was going to have to face a new therapy that had only been available in the last couple of years without the veteran oncologist who had seen him through twelve years of successful lymphoma treatment.  Dad would be seeing a newly-hired, novice oncologist.  Dad began treatment with a monoclonal antibody treatment called Adcetris.  I never liked the new novice oncologist dad was assigned because she was very dismissive to me when I asked her questions. She was very adamant that her way was the best and only way when it came to my dad's treatment.  Dad successfully was treated with three rounds of Adcetris and then he had a CT scan completed to determine how well the treatment was working.  The results showed no sign of the lymphoma; however, it did show that dad had a lower lung infection of both lungs.  This is also known as pneumonia, folks.  Dad's novice oncologist chose to place him on a low dose of oral Augmentin.  His pneumonia grew worse and my mom called the cancer center to inform them she needed dad's oncologist to call her as soon as possible because dad's symptoms were worsening and not responding to the Augmentin.  No one from this cancer center returned a call to my mom regarding my dad's case.  I called the next day about this lack of follow up and was informed by the cancer center telephone operator that my mom should have kept calling them because they get busy and may not get a message.  When the oncologist's assistant called my mom, she was distraught and crying because she had been reamed out for not getting back to a message regarding my dad's case and worsening condition.  The oncologist's assistant then called my mom crying about how she had been called on the carpet for her inadequate response.  My mom didn't need to deal with this assistant's nonperformance issues; the oncologist should have returned a call to my mom immediately.  Since my dad was due to see the oncologist at the cancer center the next day, he waited for his appointment the next morning to see his oncologist. 

The oncologist did not perform a chest x-ray to assess the state of the pneumonia in his lungs.  Dad was having difficulty breathing and he had swelling in his ankles and feet.  This oncologist advised keeping my dad on the Augmentin which was not working and also added Prednisone.  This was a bad judgement call as my dad should have been admitted immediately to the hospital and his pneumonia type identified followed by serious intravenous antibiotics specific to his pneumonia.  When my mom called the oncologist back on Friday to tell her dad was getting even worse, the oncologist advised remaining on the same dose of Augmentin and Prednisone.  Well, by Monday my mom frantically called me asking what she should do.  I advised her to get dad to the emergency room.  Guess what?  The doctor in the emergency room did a chest x-ray and CT scan and realized not only did my dad have a phenomenally difficult to treat pneumonia, but also respiratory failure as well as a pneumothorax or collapsed lung.  The ER doctor immediately started dad on the precise forms of intravenous antibiotics he should have been on from the initial findings of pneumonia infection.  The ER doctor also placed him on full oxygen and then my dad was transferred to another hospital because the type of doctors he would require for treatment did not have privileges at his hospital's cancer center.  Dad was in the hospital for three weeks.  During his second week while taking rehabilitation in the hospital, he fell while trying to walk with a nurse and my mom's assistance.  Dad crashed and all hands came on deck to revive him.  At this point, his heart was also giving him problems.  I called the cancer center on numerous occasions to relay the inadequacies in my dad's care to the director of the cancer center.  I even called to ask for assistance to obtain the help of dad's former, veteran oncologist.  Do you know what the director of this cancer center said to me while I called him from a hospital lobby?  He said, "You're dad will never walk out of that hospital like he walked in to the emergency room.  It's over.  His body is giving out.  I realize you are trying to handle this from afar." At that point I informed him the only person handling this from afar was him as I was in the hospital with my dad.  The cancer director then said to me, I don't mean to sound....." and he ceased speaking because he could not find a word to describe his behavior.  Since I am an English teacher and this cancer center director couldn't find a word to explain his behavior I said, "Insensitive, Uncaring... and are you telling me that my dad is going to die?  Because you've never seen or examined my dad." Would you like to know what his answer was folks?  He said, "Well, I don't want to give you any false hope.  And I don't have access to your dad's former oncologist even though he does now practice at the hospital where your dad is.  There is nothing further I can do to help you." What a jerk.  Would you want a man like this in charge of a cancer center?  Not me.

My dad would die a week later.  I eventually filed a complaint with the VP of this cancer center and it took repeated attempts to get his attention much less a call from him.  He assured me he would have his medical director investigate my dad's case.  Later, the cancer center VP called to tell me that another oncologist and general surgeon found no inadequacies in the way my dad's case was handled.  I asked him what consequences he implemented for his cancer center director who was such an incompetent and insensitive jerk to me and my family.  The response?  "Well, he reports directly to me and I've had a chat with him about it." "A chat?" I asked incredulously.  "I don't think I would want him managing my cancer center much less interacting with cancer patients or their families," I replied. 

Later, I filed a report with The Joint Commission that oversees hospital certification and care.  They wanted permission to give my complaint and evidence to the director and VP of the cancer center.  I informed them that those folks already had that information.  And to this day, both the novice oncologist, the cancer center director and cancer center VP are still in power and as far as I know, no one has ever been held accountable.  So that is why my fellow North Carolinians, I sincerely believe you should think about where and from whom you receive cancer treatment.  Because not all oncologists graduated at the top of their class and not all cancer centers are managed by folks who generally have a sincere interest about the quality of care a cancer patient or their family members receive.