The Dark Days

When someone dies, the grief for those left behind comes in waves.  You have your good days, where the sun shines inexplicably and you know that there is joy in the world in spite of your loss.  But, you also have the dark days, the days when even seemingly insignificant events leave you weeping in the corner desperately wishing you could bring the person back healthy and whole.  Every member of my family has had and will continue to have our dark days after the loss of my dad. 

Dad was a real presence in our life, he had a great sense of humor, cared deeply about what was going on in the lives of the people he loved, and had an opinion about everything.  Without him, there is a void.

My family is not unique, anyone who has experienced a significant loss knows this story, the ups, the downs, the days you are doing great and unexpectedly crash hard into, “I miss my Daddy.”  So, how does this melodrama and seemingly self-indulgent rant tie into the world of bioethics?  One word…guilt.

On the dark days we run events with the person we lost over and over: fights from months ago, days you went to visit and didn’t stay as long as you could have, times when you could have done something different to make him more comfortable, times when you were not as patient or kind as you should have been, or his last days and the events that led to it.  Even if you have little or nothing to feel guilty about, and are secure in the knowledge that you did the best you could with the tools and information at your disposal, feelings of false guilt, failure, and regret creep in on the dark days.

During my schooling I have read several end of life case studies, so not many of the turns we took in the ICU surprised me.  I knew on the day my father was taken to the emergency room that we may have to eventually make the decision to remove ventilator support and allow him to die.  I also know that this was the right decision.  However, I still have moments when the whole situation haunts me, when I wish there had been another way and when I feel responsible for my father’s death. 

The current medical system made me take on that responsibility.  The doctors at the hospital chose to allow me and my family to start every conversation about removing Dad from life support.  The hospital’s policies forced us to make every difficult decision and bear the full weight of those decisions.  This is an unjust system!  What are we doing to families?  Families already wracked with grief, existing on fumes of adrenaline, and in a fog of sorrow and confusion. 

To a person in this weakened state the medical community says, “make the most difficult and agonizing decision of your life, it’s all on you kiddo.”  I am not saying that the medical staff should take this decision solely upon themselves, there is a sense of closure that can come to the family from being part of the decision making process.  However, it should be a true team, with all members bearing responsibility, but the doctor perhaps taking the lion’s share.

The physician has chosen his/her profession, and in the profession of healing your patients will sometimes die.  Everybody will die eventually, and physicians play the role of gatekeeper, having to know when someone can be saved and when to let them go.  The day my father died, was just another work day for his nurses and physicians, as it should have been.  They didn’t know my dad, or love him like we do; they wouldn’t and shouldn’t be affected by his death like us either.  This makes them more able to bear the responsibility of the final decision, they won’t be haunted by guilt, regret, or questions for the rest of their days like the immediate family members will.

I think there is a happy medium between making the decision without family input and forcing the family bear all of the responsibility of the decision.  This is taking a team approach, ask the family to be part of the team, bring them into important conversations and explain what is happening in a way that they can understand.  The physician should lead this team and the conversations about removing life support, and should facilitate the final decision.  If Dad’s doctor had stepped up to lead the conversations my family would have felt like we weren’t alone in the decision making, and that the doctor was taking responsibility for his patient.  Without this, we felt like we were the only ones who cared about what was truly best for Dad.

Reflecting on our experience, I think poor hospital policy was what really shifted responsibility on to my family and off of the hospital and staff.  A few minor changes and I would have felt like a team member:

1)      The palliative care nurse had to ask us whether or not we would like to start my father on vasopressors because his blood pressure was increasingly unstable.  This in itself was not a problem; the problem was that she still had to ask us this during a conversation about taking my father off of all life support.

2)      The nurse practitioner had to tell us several times, that removing the life support would most likely lead to my father’s death and ask if we were sure this is what we wanted the medical staff to do.  Making sure the family understands the decision is important, but repeating it 3 and 4 times because of the hospital policy only forces the responsibility of the action on the grieving family and made me feel as if the hospital was washing their hands of what was about to happen.

3)      The hospital could enact policies and trainings that help physicians with communication skills for dealing with end of life issues.  Encourage the physicians to take on the responsibility with their patient’s family at this difficult time and take a team approach.

I will live the rest of my life carrying the memory of how my father died.  I know logically that we made the right choice for him, and that my family has nothing to feel guilty about, and when those natural feelings of guilt creep in, I can dismiss them.  However, I see no reason to put more families through what mine went through, and would really like to see hospitals and physicians work to change this broken system.

My Last Lesson with Dad

My dad was an amazing man.  He was joyful, kind, and caring to everyone he met.  On October 14^th he left us to be with his savior in Heaven.  Dad did not have an easy life, in his last five years he suffered with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).  He lost the use of his legs entirely, riding around in a motorized wheelchair.  He also had weakening of the muscles in his torso and diaphragm.

Dad never lost his love of life, on October 6^th he was organizing a Tootsie Roll drive at church, my mom and I close behind to take orders from him and tie aprons on his fellow Knight’s of Columbus volunteers.  He never let the disease get to him or bring him down.  He is and will remain an inspiration to me.

Dad and I had a special relationship.  I am adventurous in certain aspects of my life, but having severe vision issues since birth, some of the more mundane of life’s adventures have proven challenging for me.  These were things like learning to: ride a bike, drive a car, water ski, etc.   I would flatly refuse to learn, saying such skills were not necessary to life and dad, sagely disagreeing with me, would come up with a creative way to help me over the hurdle.

 

I learned to ride a bike in the grassy field behind our house, so I didn’t need to worry about falling,   Day after day, out we would go, Dad so patient and calm until his timid little girl could brave the sidewalk like all of her friends.  The point here is that my father pushed me; he never let me rest on, “I just can’t do it Dad.”  He wanted me to be what he knew I could, not stop at my presumed limits.

On October 9^th, Dad’s lungs failed him.  He couldn’t catch his breath, even with his Bi-pap machine and as EMS took him to the ambulance his heart stopped beating.  They performed CPR and used their paddles, but the notes say that Dad was without oxygen for 19 minutes that afternoon. 

Our family had known for a while that we needed to have the “vent talk.”  By this I mean, we knew that the road we were on would likely lead to Dad being placed on a ventilator to assist with his breathing full time.  People with ALS often have to decide if they want to live life on a vent or if when the disease has progressed to their lungs they will refuse the vent, likely leading to an earlier death.  Dad never wanted to talk about this, so we never did.

When an acute incident happens however, there is no talking.  By the time we saw Dad in the emergency room, he was vented and that was that.  No decision available, no discussion necessary.  Mom and I were left to wonder, “What now?  Will he be able to come off the vent or will this be his new life?”  At the time we didn’t know that he had been without oxygen for 19 minutes.

Here is the funny thing I have learned about hospitals…they don’t tell you everything.  We knew Dad’s condition was critical, we knew to sleep next to the phone for a call that night, but it was several days later when we found out how long he had been gone before they got his heart beating again.  It very likely wouldn’t have changed anything, but I always think more information is better than less.

Up to ICU we went a few hours later, tubes everywhere, monitors beeping and flashing, and a straight shooting nurse practitioner who asked us what the hospital should do if Dad’s heart stopped again.  Still no one told us how long he had been without oxygen or that Dad’s heart had actually stopped twice already, not just once as we all believed.  And so began family conference number one, ending with the decision to make Dad a Do Not Resuscitate (DNR).

They had Dad on what they called a “Hypothermia Protocol.”  A few mistaken descriptions from clinicians and almost two days later we discovered that this meant they cooled his core body temperature to 92 degrees and left him there for 24 hours, and then they slowly warmed him back to a normal body temperature.

Every clinician had their own idea of when we should see progress.  Many told us to not give up hope and keep watching Dad, but none volunteered a time frame.  Neurology was kind and thorough, but volunteered very little information. 

By Saturday, this daughter wanted answers.  I cornered a neurologist and asked what I thought was a simple and common question.  “How long until you would no longer expect to see improvement?  When do we need to start talking about the difficult decision of removing Dad from the vent?”  Like pulling teeth I got an answer of 72 hours after rewarming.

As we kept vigil for 12 to 15 hours a day, Dad’s condition declined.  He opened his eyes only a few times and they were unfocused, He ran a fever, which kept creeping higher.  His blood pressure became unstable.  

“His pressure is low, I am going to do such and such to raise it.” We would hear.  Then, “his pressure is too high, I need to up his sedation.”  All the while we were instructed to watch for signs that he is waking up, and a hope that we could assess his ability to function.

By Sunday, we reached our limit.  We had found out more about the EMS report and were continuing to hear a variety of stories from doctors, never giving a real prognosis, and offering very little information. 

The interaction that proved to be the final straw was a pulmonologist who cavalierly said that we would have to meet with neurology and then decide about whether or not we wanted to continue on the vent.  Our stunned reaction to his callous presentation of that information caused his fellow physician to very condescendingly say: “A neurologist, that’s a brain doctor.”  A brain doctor?  No it isn’t.  Neurology is complex specialty dealing not only with the brain, but with the nervous system, muscles and movement.  My father had ALS, a neurological condition, we are very familiar with the specialty of neurology and “brain doctor” isn’t the half of it.

My mom, sister, and I decided it was time to regain some control.  We were stressed, overwhelmed, tired, and confused.  We were feeling pushed around, taken advantage of, and out of control.  We are not ignorant people; we knew what it meant to make my father a DNR.  It meant that if his heart stopped again, the hospital staff would allow him to die and not try to intervene.  We knew that we were hurdling ever closer to making the decision to remove him from life support and allow him to die.  We knew that the constant sedation medication would make it incredibly hard to know if Dad would even be able to wake up.

We felt helpless and out of control.  Dad’s nurse came to find us in the waiting room; she handled it well as we less-than-eloquently explained how we were frustrated with the lack of information and were downright insulted by the pulmonologist calling a neurologist a “brain doctor.”  The nurse was kind and calm, she said that we did have options, and explained them to us.  We didn’t want to prolong Dad’s suffering unnecessarily and decided that if we saw no improvement by the next afternoon we would remove the life support.

On the morning of October 14^th, Dad’s fever had risen, his blood pressure was more unstable, the vent settings had been raised, and he was completely non-responsive.  Mercifully, his declining condition helped to validate our decision to remove him from life support. 

My family is devoutly Catholic, and we were blessed to have a priest-friend say Mass in Dad’s room during his final hours.  It was beautiful and grace-filled, a precious balm for the road ahead.  When everyone had made their peace and said goodbye we signed the paperwork and stood behind the curtain as they unhooked the ventilator and gave Dad medications to keep him comfortable.  When allowed, we returned and softly prayed him to his Maker.

As a unit, my family is calm, intelligent, rational, and faithful.  We like to have all of the necessary information to make a decision and do not shy away from difficult ones.  Once made, we do not second guess ourselves, or require handholding or constant validation.  We know the consequences of our actions and decisions and bear them in their entirety.

When Dad passed away there was not a dry eye in the room, including clinicians.  The very kind woman from hospice even told my sister that Dad’s death was the most peaceful, prayerful, loving death she had ever witnessed. 

Dad lived his whole life with integrity and honor and as a family, we were determined that his death would be the same.

We are not the norm, the clinicians at this hospital were woefully unprepared for an educated and secure family.  Most were visibly shocked that we understood Dad’s condition so well.  I am at peace with how my father died and I don’t think I would have made different decisions if given more information upfront.  However, I am still disappointed that all of the necessary information was not volunteered by the clinical staff throughout Dad’s hospital stay.

So, how does this tie into my tales of bike riding?  Prior to this week, I was a bioethicist who would only scratch the surface of an end of life debate.  I don’t like to think too deeply into the issues, because they are difficult to face.  Dad however, knew better for me, his final act in this world was one that pushed me deeper in my career and helped me transition from grass to sidewalk in my discussion of end of life issues.  It is important to talk about these things and not just play it safe.

Dad’s last week led me to some important questions.  It hasn’t led me to all of the answers, but that is why bioethics is a career of open debate and discussion.

1.    How much information should be given to the families about the condition of their loved one?  And when should this information be presented?

2.    Should families be presented with all options at the beginning of the hospital visit, to maintain a feeling of control in such a stressful situation?

3.    When is a clinician focusing on the positive aspects of the care too much?  Should we train our physicians to stay away from avenues of “false hope?”

4.    Dad had a 5% chance of regaining consciousness after the Hypothermia Protocol.  Among this 5% there are varying levels of ability, so it was not a guarantee that if he woke up he would be able to do or understand all of the things he could before his cardiac arrest.  Is it worth it to put the families through the 6 days of pure hell we experienced, for a 5% chance of survival?

5.    With every little fluctuation of blood pressure, heart rate, etc. Dad was given treatment.  This is meant to keep the person stable and prevent an acute incident and death.  Thereby, pushing families (often unprepared to make such decisions) into a position of choosing to take their loved one off of life support.  Is this fair to the families?  Should we work so desperately to keep such very ill people alive, when their bodies are failing and they seem to be trying to die?

6.    It is my opinion in these situations that the most important thing a hospital staff can do is adequately read the family.  Some people will need more explanation of events, some less.  Some will want all available information; some can only handle the necessary pieces of the puzzle.  Some will be prepared to make difficult decisions without internal strife, and some will need mediation.  How can we adequately assess a family’s needs and treat them with the utmost dignity and respect?

Americans have a very immature view of death.  We don’t like to think about it, talk about it, or deal with it.  We often try to deny that it happens at all.  This is ridiculous; each and every one of us will one day make our journey out of this world, denying the fact will not make it easier when the day comes.

After going through this journey with Dad, I think that the medical community can and should take steps to aid in American’s understanding and acceptance of death as a part of life.  Modern medicine is full of amazing advances, but it seems to me that we should also be more honest about its limitations.

I miss my dad, his cheerful spirit, his warm embrace, and his unfailing ability to guide me to the “high road” in life.  As I turn 30 today, without him on my birthday for the first time in my life, I pray that his death won’t be in vain.  I pray that our story will spark others to deepen their understanding of end of life issues and that the medical community can come up with creative solutions to make this difficult time even slightly easier for patients.

Snap Judgement Episode 2: Patient or Customer

I read an article today arguing that hospitals should consider their patrons as customers rather than patients.  It was an intriguing article and nerd that I am, my first thought was...gee this would be a great debate topic for my blog.

Please read the full article here: http://www.foxnews.com/opinion/2013/09/19/what-if-hospitals-thought-us-as-customers-not-patients/

A quick summary:  The author was recently diagnosed with bladder cancer and has had unpleasant experiences at a few different hospitals during his treatment.  He mentions that at one hospital he was left outside of a bathroom by an orderly.  The orderly was called to tend to another patient and the author was left in his wheelchair outside of a non-handicapped accessible bathroom.  Thankfully, a doctor came and assisted him to a restroom that would accommodate his wheelchair.  At the end of the article the author goes on to say that hospitals should take lessons in customer service from companies like Disney.  He says: 
"Imagine a hospital that has retained Disney to train its staff in fundamental customer service.

Imagine hospital workers who smile and tell you how pleased they are you chose to come to their hospital. 

It is beyond hope that any physician would ever think to acknowledge a customer relationship with “patients.' Yet imagine the feeling in your soul if you ever were to approach the desk in a hospital waiting room to find a smiling face greeting you with a bright look and the words, “Good Morning. I am so pleased you decided to come here for your medical problems. I am here to help you.'"

Read more: http://www.foxnews.com/opinion/2013/09/19/what-if-hospitals-thought-us-as-customers-not-patients/#ixzz2fO4tqJQ4

In my recurring series "Snap Judgement" I like to encourage discussion and debate on a topic, so please leave your thoughts in the comment section below.  I look forward to hearing the many opinions and would like to now propose some specific questions for discussion:

1) Should hospital patrons be considered customers when most of the payment for services comes from third party sources, such as private insurance?  How do we reconcile this issue or do we need to?

2) Does this problem become worse under a national healthcare program?  Would the patrons have a leg to stand on with the "customer" argument in this scenario?

3) How could a hospital adapt the customer service techniques of a corporation like Disney to allow them to accommodate their patrons in a friendly and welcoming environment, while maintaining the highest standards in healthcare?  Would one necessarily jeopardize the other?

I look forward to a lively discussion!  Please remember to keep your comments on topic, professional and edifying: no swearing, petty name calling, or personal attacks.  This is an avenue for wholesome, fair minded debate, and this author reserves the right to remove any comments she feels stifle debate or contain inappropriate content.  Thank you!

Three’s a Crowd…

There is a new IVF (In Vitro Fertilization) procedure being developed in the United Kingdom.  The procedure aims to prevent diseases of the Mitochonidria.  These include certain types of Muscular Dystrophy that are genetically passed down from the mother.  This procedure would introduce DNA from a third parent by the transfer of the nucleolus from a donor egg.   99.8% of the genes of the resulting child would be from the biological mother and father.  Approximately 0.2% would come from the donor woman's egg.  This would result in the child having 3 biological parents.

The whole idea is an interesting one and it's a noble goal to want to protect these children from Mitochondrial disease.  However, I think it's a “slippery slope.”  Yes, yes, there it is…the standard conservative argument for everything.  I hate making it as much as you probably hate reading it, but I think it applies in this case.

When you talk about genetically modifying humans (which is what we are talking about here), you open some very scary doors.  If a person's genetics can be modified to correct a genetic disease at conception, could they be modified to ensure the child will be tall?  Or, to ensure she will have blue eyes?  The potential is "designer children," or children whose genetic makeup has been specifically chosen.

I can already hear some of you out there: “That will never happen.”  “No one is going to pay that kind of money to pick out their child’s eye color.”  And so on, and so on.

For those who are skeptical of the idea, please allow me to give you an example of who this technique could be marketed to:

Kim Kardashian - a woman with more money than brains, whose maternal instinct didn’t stop her from naming her daughter North West.  Could you honestly tell me that someone like Ms. Kardashian wouldn’t want to create her “perfect” child?  Or, that no company would allow her to do this for the right price?

There is an epidemic in our society right now of “trophy babies.”  Some parents have babies and forget that they are tiny people.  That those children need to be nurtured and taught, and that one day they are going to need to be functional adults.  I think the ability to have “designer children,” would only make this trend worse.  It would allow those with enough money to choose qualities in their child like a little girl picks a doll from the American Girl store.  I don’t think this would be good for the child or society.

What if the “designer baby” trend then really took off?  What would society look like?  Naturally, there would be the haves and the have-nots.  People who could afford it would select for: intelligence, athleticism, beauty, etc., and the gap would widen between socioeconomic classes in our country.

As much as I would love to see a cure for mitochondrial diseases, any time we manipulate a person’s genes we are playing with fire.

Righteous Indignation

Lately, I have heard several news stories that have shocked and saddened me.  I want to believe in basic human decency,in charity, and love of neighbor, but sometimes feel like evidence is contrary to my preferred view.

I know terrible aspects of society exist, but usually choose not to focus on them.  I feel they are anomalies and that people are generally good and decent.  Though, there are some stories lately that have threatened my world view.  I focus on these stores in this post because I think it is important that we as a civil society become outraged by these events.

Story 1: Texas - A 13 year old foster child runs away from her foster home.  She accepts a ride from three men, is taken to an apartment and repeatedly raped by up to 10 different men through the night.  Full story: http://www.theblaze.com/stories/2013/07/24/immigration-detainers-placed-on-two-mexican-men-charged-in-horrific-gang-rape-of-13-year-old-texas-girl/

Story 2: Oklahoma - A 23 year old college baseball player from Australia was shot in the back while walking down the street.  He was killed by 3 teenage boys who claimed to be "bored" and therefore decided to "kill somebody." Full story: http://www.huffingtonpost.com/2013/08/19/christopher-lane-australian-baseball-player-dies_n_3782318.html

Story 3: Ontario, Canada - The family of a severely autistic child found an anonymous letter at their home.  The letter was full of hateful language putting down their child, calling him useless, unlovable, and suggesting the mother euthanize her son and allow scientists to harvest his organs.  Please read the full text of the letter, it is shocking.  Full story: http://www.theblaze.com/stories/2013/08/19/read-the-unbelievably-hateful-letter-sent-to-family-with-autistic-child-do-the-right-thing-and-move-or-euthanize-him/

Why did I choose these stories?  What links them to each other?  They all show a lack of respect for the human person.  The men in the first story lack respect for women and children.  The boys in the second, lack respect for human life and do not recognize moral consequences.  The woman in the 3rd story does not feel that a handicapped child or his family deserve to be treated with dignity or respect.

These events should outrage us, as decent citizens we should unite against this type of senseless violence.  I think they do outrage us, but are we giving them enough focus in the media? Are these events spurring us to discussions of causality or pointing us to a bigger flaw in the fabric of society?

It is said that you can tell the character of a man by how he treats those weaker than him.  We are a nation who sides with the underdog, we love the kid who stands up to the bully to protect the nerd, the hero who jumps on the subway track to save someone, the children who find victory and their place at the Special Olympics.

What type of character do the people in these news stories have?  Do the men who raped that poor girl have any decency?  Do the boys who killed that college student have a conscience?  Does the woman who wrote that letter have compassion?  These people are self-absorbed, concerned entirely with their own desires and comfort.  Their actions are cruel and evil.  In the first two cases the persons should be prosecuted to the fullest extent of the law.  In the third she should be held accountable for her rude behavior and publicly shamed by her neighbors.

Allowing these news stories to come and go is not enough.  We need to be outraged.  We need to denounce these types of senseless acts of violence as wrong.  Our world is full of gray areas, but is there still right and wrong?  And do we still know what that is?

Detroit is no exception to these types of unfortunate events.  We recently had two homeless men killed in a hit and run, they were not hit once, but by two different cars, neither driver stopped to care for these men.  I am ashamed to live in a city where that would happen.  

There is decency left in our society though, and this gives me hope.  One of those men used to sit in his wheel chair by the freeway entrance, since his death someone placed his wheel chair on that corner and people have placed flowers and trinkets in his honor and written messages on the chair.  The other man was a regular at Detroit Tiger's games, a bit of a local celebrity for fans.  Shirts were made up with this man's signature phrase ("Eat 'em up Tigers") and sold to cover funeral costs for the two men.  We are a good and decent people, but we need to remember this and express it more often.

Let us be: good, compassionate, loving, hopeful, helpful, and kind.  Let us build a world of respect and love for one another.  We are all different, but that is what makes life interesting and exciting.  How dull the world would be if we were all the same.

Different, but equal, no one of us is more important than another.  We have become a self-absorbed, self-obsessed culture, constantly on social media glorifying our own lives.  So many of us have lost our connection with other members of society, we have lost our sense of community, our respect for people, and the reality of responsibility and consequence.  

For me, I want to see all persons, of all walks of life, races, sexes, intelligence levels, physical ability, religions, etc. treated with the respect and decency they deserve.  I will not stop being outraged by the news stories I shared and I will not stop working for a world where these stories cease to exist.

Snap Judgement Episode 1: Anthony Stokes' Heart Transplant

I want this blog to be a dialog encouraging comments, discussion, argument, and critical thought.  Therefore I am introducing a new segment called "Snap Judgement."  In this recurring series I will present a news story, case study, or question for thought and discussion.  Please participate by leaving your opinion and thoughts on the topic in the comments section.  I will refrain from giving my opinion in the body of the text but participate in the discussion along with my readers.

Snap Judgement Episode 1: Anthony Stokes' Heart Transplant

This week an Atlanta, Georgia Children's Hospital made the news.  15 year old Anthony Stokes was diagnosed with an enlarged heart, the only cure is a heart transplant.  Without transplant Anthony was given 6 months to live.

The hospital initially refused to place Anthony's name on the transplant list.  The hospital listed "non-compliance" as the reason, feeling that Anthony was not likely to comply with the post-transplant medication or follow up schedule.  Anthony has a history of low grades and has had trouble with the law.

Anthony's family began an all out media blitz, telling their story to all who will listen.  The family claims that the hospital has no legitimate reason to believe the Anthony would be "non-compliant" as until his recent diagnosis he was in good health and has no history with the hospital.  The Stokes Family's story has captured the media's attention and this week the hospital's decision was reversed.

This is of course a very quick summary of the situation.  Other articles can be found here:
 https://www.google.com/search?hl=en&gl=us&tbm=nws&authuser=0&q=Anthony+Stokes

A few questions for discussion:

1) How do you feel about the recent trend of media involvement in transplant decisions?  Do you think the hospital reversal in this case, as well as the adult lung transplant in the 10yr old girl from earlier this summer, were directly related to the media taking up the fight of the families?

2) Do you think the hospital has a right to refuse transplant to patients with a history of non-compliance, or strong indicators that they will be non-compliant?  And if so, what indication for non-compliance would be justified?

I look forward to a lively debate and discussion on this topic.  Please remember to keep your comments, on topic, professional and edifying: no swearing, petty name calling, or personal attacks.  This is an avenue for wholesome, fair minded debate, and this author reserves the right to remove any comments she feels stifle debate or contain inappropriate content.  Thank you!

Dear Jhonny…

So, it’s been an interesting week in Major League Baseball; an historic take down of steroid abusers and one of my Tigers is among them.  It’s a 50 game suspension for Tiger’s shortstop, Jhonny Peralta, and over 200 games for New York Yankee, Alex Rodriguez (A-Rod). 

In total, 13 players were suspended for purchasing performance enhancing drugs (PEDs) through a Miami clinic.  This was the largest PED suspension in the history of baseball and many are praising Major League Baseball (MLB) management for their vigilance in cleaning up the sport.  I am not among those heaping praises.  Personally, I think the whole thing is for show and these players drew the short straw.

As fans we insist that our favorite sports get faster, better, and more exciting every year.  We want athletes of super human ability, but certainly don’t want them to take PEDs to get these abilities.  Dear sports fans…we can’t have it both ways.

Therefore, we must choose: do we want a pure, clean, wholesome sport with potentially fewer home runs, and less excitement, or do we accept the use of PEDs?

Until we answer this question honestly the game will never be “clean.”  Personally, I wouldn’t mind a PED free baseball game.  I tend to like sports in their non-enhanced form.  For instance, I find college basketball far more energetic and entertaining than the NBA games.  Is this true for the majority of fans however?

We say we don’t want PEDs in sports because they are unhealthy for the players.  The following is a list of side effects copied from the MayoClinic website:

Men may develop:

·         Prominent breasts

·         Baldness

·         Shrunken testicles

·         Infertility

·         Impotence

Women may develop:

·         A deeper voice

·         An enlarged clitoris

·         Increased body hair

·         Baldness

·         Infrequent or absent periods

Both men and women might experience:

·         Severe acne

·         Increased risk of tendinitis and tendon rupture

·         Liver abnormalities and tumors

·         Increased low-density lipoprotein (LDL) cholesterol (the "bad" cholesterol)

·         Decreased high-density lipoprotein (HDL) cholesterol (the "good" cholesterol)

·         High blood pressure (hypertension)

·         Heart and circulatory problems

·         Prostate gland enlargement

·         Aggressive behaviors, rage or violence

·         Psychiatric disorders, such as depression

·         Drug dependence

·         Infections or diseases such as HIV or hepatitis if you're injecting the drugs

Having read the effects, what are your thoughts?  Do we downgrade the game to protect the health of our boys?  Do we openly accept and endorse the use of steroids, sacrificing the health of our players and potentially teaching bad lessons to young impressionable fans?  Or do we maintain this “don’t ask, don’t tell” approach to steroid use, every so often catching a player or two for a sacrifice?

I am a woman of clear opinions, lines, and values.  I do not like half-hearted solutions and problems being swept under the rug.  If we do not care about steroid use we should stop looking for it.  If we do care, we should crack down hard and rid the game of PEDs for good.  This short term suspension for players involved with a single supplier being lauded as the great clean-up of baseball is garbage.  MLB, do it right or not at all..

Hunger Games: Guantanamo Bay

                Guantanamo Bay is back in the news.  It seems that several of the inmates are currently participating in a hunger strike that began in February of this year.  It was started to draw attention to the camp and make a political statement that it should be closed as President Obama promised it would be during his 2008 campaign. 

The hunger strike started with just a few prisoners and has expanded to over 100 of the 166 detainees.  About 45 of them have lost a significant amount of weight and require forced feeding to keep them alive.

                So, what does “forced feeding” entail exactly?  Twice each day the prisoner is restrained at the hands, feet, and head, in a chair, a feeding tube is inserted into the stomach though the nose, and a protein shake (Ensure, or the like) fed to the prisoner through this tube.  The process can take up to 2 hours per person, per feeding.  With 45 people on feedings, each twice a day, this is no small operation for the Guantanamo Bay medical staff.

                Some activist groups consider the forced feedings to be torture.  To back up their claim they look to the world of medical ethics.  The World Medical Association and American Medical Association, among other organizations, accept that patients have the right to refuse life sustaining treatment, including tube feedings.  This has been established through cases like that of Terri Schiavo, the Florida woman in a vegetative state whose story made headline news in the early 2000s.

                Reprieve, a human rights group, recently released a video of Hip-hop artist/actor, Yasiin Bey (also known as Mos Def) undergoing the same forced feeding procedure that is happening in Guantanamo Bay.  In the video, Mr. Bey is unable to complete the procedure and it is stopped before the tube is even completely lowered into his stomach.  For much of the 4 minute video he is seen screaming and crying in an orange jumpsuit while being restrained in a chair, with people in white lab coats attempting to place the tube in his nose.  He continues to scream and struggle, until an off screen voice tells them to stop the procedure.

                The video was made to illustrate the painful nature of the forced feeding procedure; the group considers the procedure a form of torture and has openly called for the feedings to be stopped.  The tag on the Reprieve website is, “Reprieve delivers justice and saves lives, from death row to Guantanamo Bay.”   Given their current argument about the forced feedings I find this tag line to be ironic.

It seems Reprieve has missed a major memo, so let me break it down here:

If we stop the forced feedings and the prisoners still refuse nourishment, they WILL die!

So, the question becomes: can you live with that?

If you will please look to the left of our military you will see a rock and to the right a hard place…now choose.

The military defends their decision to pursue the forced feedings saying they don’t allow suicide by any other means, so they choose not to allow it in the form of starvation.  I understand their position and that they are trying to prevent the loss of life.

My personal feelings however, are against the forced feedings.  Not because they are torturous or painful, though I’m sure the procedure is less than pleasant.  I am against them because I think our military and our country are being manipulated by the prisoners at Guantanamo Bay.  They stop eating and what has been the American reaction?

-          The New York Times printed an editorial about the horrors of Guantanamo Bay in a prisoner’s own words. 

-          We discuss how the forced feedings could interfere with Ramadan, therefore violating the prisoners’ right to freedom of religion.  (Side note: The feedings are currently being performed at night to respect the religious traditions of the prisoners.)   

-          Human rights activist groups, like Reprieve, take up the cause and renew the fight for the camp to be closed.

I don’t think the men of Guantanamo Bay actually want to die the miserable death of starvation, but rather they have found a captive audience for this new game of theirs.  If the feedings continue the hunger strike will never end.  The only way I can see to convince the men to start eating again is to let them see their decisions play out in some of their comrades.

I understand that my opinion is probably not a popular one, I don’t even like it myself to be honest, but what choice do we have?  Many will certainly say, “Close Guantanamo Bay…there is your choice.”  To them I say:

Whether you choose to believe it or not, there is a reason these men are being held in Guantanamo Bay and a reason that our current President, like the last one, has not closed the facility.

Take a Breath

The country has been gripped with interest watching the case of Sarah Murnaghan.  Sarah is a 10 year old Cystic Fibrosis patient who was in desperate need of a lung transplant.  The current transplant waiting list rules state that children under the age of 12 can receive lungs from an adult donor only if those lungs are not needed for an adult or adolescent in the same geographical area.

On the surface this may sound malicious and unjust, but let’s dig deeper.  In order for a child, under the age of 12, to receive adult lungs they must be re-sized for the smaller chest cavity of the child.  Current research says that this re-sizing process can make the lungs less stable and the transplant less successful than adolescent or adult transplants.

Being a logical thinker these types of media frenzy stories drive me batty.  An uneducated public is led by a manipulative or possibly, equally uneducated media to “react” on emotion rather than truly think about the issue.  In a moment the country was abuzz about the “unfair” transplant allocation rules and how we need to change them RIGHT NOW!

I am not saying that these rules don’t need to be updated; I am certainly no authority on lung allocation or transplantation.  My knowledge in this area is limited to information that came up in my recent Google search.  We may very well need to change the process, but let’s take our time, use logic, and consult the experts.

Certainly, Sarah’s story is heart wrenching and no one wants to see a little girl’s life end.  Medical policy however, cannot be created based on preventing whichever outcome would make us the most sad.  UNOS, the United Network for Organ Sharing, has difficult, almost impossible decisions to make every day about who receives the organs they have available.  They have to make these decisions logically and free of emotion.  To be truly just, they need to give the organs to patients who will benefit from them the most, this includes considering which transplants will be the most successful.

After the nationwide outcry and a court order, Sarah’s name was given priority on the lung transplant list.  She received her transplant and her body almost immediately rejected the lungs.  Three days later Sarah received a second transplant; it is extremely rare to receive two transplants so close together.  This second surgery was approximately two weeks ago, and according to press releases from her parents Sarah is doing well.

We should certainly all be happy for Sarah and her family and pray for her continued recovery.  I have no issue at all with the Murnaghan’s fight for their daughter.  I understand what it means to have a family member with a terminal illness and the need to exhaust every resource within reach to save them.  Any avenue that brings a family peace or allows them to continue the fight is fine with me.

I am disappointed however with the reactive media and general public.  Organ allocation is a complex process and should be treated as such.  This means any proposed changes should be thoughtful, logical, and well supported with data.  Sarah’s story stirs emotions in us and we want to help her, but what about the other people on the transplant list?

Maybe there is a 15 year old honors student, or a 22 year old with aspirations for medical school, or a 25 year old mother of 2, or 40 year old father of 5.  We need to keep in mind that Sarah’s is the story we know, but not the only sad story on the lung transplant waiting list.  We trust UNOS with the decisions, because they have a commitment to making them logically, based on need and benefit rather than emotion.

A little bit of Heaven or Hell...your choice and mine...

Today Fr. Tom Hagea, a visiting missionary from Haiti, said Mass at my church.  He gave an absolutely incredible homily that I think should be shared.  Father talked about how we should look for and create "a little bit of Heaven" in our lives.

He talked about what is truly important: family, friends, love, even watching a sunset and seeing the glory of God in it.  He spoke about this great country of ours, how we are richly blessed in America, but often toss those blessings aside.  He talked about how our culture encourages self-indulgent behavior and narcissism.  I spoke with him after Mass and he said that America has a worse type of poverty than Haiti, a spiritual poverty that robs of us of the joy of the moment.

Fr. Hagea spoke hard truths in love, an art that I strive to be student of, but so often fail.  We don't always link truth and love, but if you are unwilling to speak truth to someone are you honestly showing love?  If you see a friend with broccoli stuck in her teeth and don't tell her about it because you want to save her embarrassment, have you helped?  Certainly not, you have probably caused further embarrassment in the end.  This is a simplistic example of course, but it is true in more complicated cases.  

We often don't share the hard truths for fear of being judged, ridiculed, or felt to be judging the other person.  “Live and let live,” we say.  I am a Libertarian, so to an extent I agree with this statement, but at the same time it is our duty as Christians to stand for truth, to speak truth, and to defend truth.  Changing or hiding who we are to be politically correct is cowardice.

Imagine if Corrie Ten Boom's family had thought, “I must not offend, I should keep quiet and not speak or live the truth.”  What if Mother Teresa or Pope John Paul II had kept silent?  Our job as Christians is to help lead people to Jesus...to Heaven.  We do this by living and speaking His truth in love.

The second bit, love, is also sometimes forgotten.  It is not enough to speak truth, but it must be spoken always in love.  This means meeting people where they are, showing them the incredible love God has for them, respecting their dignity and person-hood, accepting their talents and failures with the love of God.  We must not only see a world missing the truth but at the same time love that broken world like Jesus does.  Not an easy thing for sure, and hard as I try to combine both, I all too often hear myself speak truths in the form of judgments or keep the words in my head and heart in a failed attempt "to be loving."

To listen to a man who so artfully combines truth and love was a blessing.  Fr. Hagea encouraged young adults to "grow up," to take responsibility for their life and actions.  He encouraged the older generation to not complain and remember that we are only retired when we have taken our last breath.  We are here together to fight for and work toward Heaven TOGETHER, yet, we sit side by side alone.  

He encouraged parents to stop spoiling children with material things, stop trying to be their children's friend, and show them real, true love.  He said that to love your child and love your spouse as an example to your child is the best gift you can give as a parent. Being raised in a house that believed this and by parents who live it every day I agree wholeheartedly with Fr. Hagea and count myself immensely blessed.

He talked about how our daily choices create a little bit of Heaven or a little bit of Hell for ourselves and those around us.  He encouraged us to see the blessings in our life, big and small, recognizing that these graces are bits of Heaven.

He talked about the Catholic Church and her unshakable focus on serving the poor and how as individual Catholics it is important for us to share this focus.  He talked about how during the earthquake in Haiti the Catholic Church sent aid that not only fulfilled the physical needs of the people but maintained and restored their dignity, something not all of the groups attempted or succeeded in doing.  He talked about what a joy it was to be Catholic, not because our church is perfect, but because it is so messy.  We are a church of people for people, imperfect on all sides.

One of the most amazing things was that Fr. Hagea didn't focus on buzzwords like abortion; he pierced right to the heart of the issue: our culture's focus on “self” and the lack of true, unconditional love.  If only more of our preachers were so courageous and so skilled in speaking church truths.

He gave me pride in my church, gave me encouragement to continue working to live and speak the truth in love, and reminded me to see and help restore dignity in every person meet.  It was a little bit of Heaven for me to hear him speak this morning.  

May each and every one of you reading this know that you are fiercely loved by God and remember that despite the struggles of life we are deeply and richly blessed.