ALS Walk and Roll 2014

As many of you know my father passed away from complications of his ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) last October.  For the past three years my family has participated in the ALS of Michigan Walk and Roll.  We are participating again this year on September 28^th at Stoney Creek.

ALS of Michigan is a fantastic organization that aims to meet the immediate needs of ALS sufferers.  When my dad was living with ALS they let him borrow a scooter, wheelchair, ramps, arm chair, and shower chair as needed.  They have an extensive lending closet to meet the needs of pALS (people with ALS) in Michigan.  The organization also provides respite care to patients in need, filling a vital need for many ALS families.

ALS of Michigan has been a wonderful organization for my family, particularly with the support groups they sponsor for pALS and their caregivers.  I am asking you to please consider donating to this great cause, every little bit helps.  Please follow this link to donate:https://ssl.charityweb.net/alsofmichigan/walknroll/theresaspranger.htm

Thank you in advance for your support!

Chill Out: A Response to “Taking the Icy Plunge”

It’s not every day I have the opportunity to articulate a cogent argument against my brilliant former professor, so when it comes I just can’t pass it up.  Recently, in “Taking the Icy Plunge (or not)” Sean Philpott-Jones argued against the #ALSIceBucketChallenge.  For those of you unfamiliar with this challenge, it is a campaign to raise money for research and awareness of a devastating disease, Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).  The idea is: one person posts a video of him/herself having a bucket of ice water poured over their head, they then challenge three friends to pour a bucket of ice water over their heads and/or donate $100 to an ALS charity.  The challenge has gone viral and has likely filled your facebook newsfeed as it has mine.

ALS is a devastating disease that slowly immobilizes its victims striking their muscles in any order: arms, legs, voice, diaphragm, any muscle can be affected.  People afflicted with the disease lose control of their muscles and at its climax are entombed in their own body, unable to move or talk, a condition referred to as “locked in syndrome.”  ALS claimed my dad last October, so my family has a very personal connection with this horrible disease.

In “Taking the Icy Plunge” the author argues that the #ALSIceBucketChallenge has two major flaws:

1.       The challenge does little to raise ALS awareness long term with videos containing little substance.

2.       In a fundraising campaign charitable donation should not play second fiddle while public humiliation takes the first chair.

Ok, so to the first point, certainly the videos aren’t classy, but (this year at least) they seem to be effective.  At this time last year the Ice Bucket Challenge had raised approximately $32,000 for ALS charities, this year $5.5 million has been raised.  Clearly, something is going right for them in 2014.  They are raising awareness of this disease and hopefully sparking an interest in people to search and learn more.  Awareness and education are very different, while the videos are hardly educational, I think the buzz they are generating is positive and could have lasting effects.  Putting more substance into the videos isn’t a bad plan however, and I would encourage anyone accepting a challenge to talk a bit about ALS, why it is important to support charities that help victims of the disease, and post a link to a specific charity with you video.

To the second point, I ask you to look at our society.  We are a culture of sound bites, flashmobs, and thoughts not exceeding 120 characters.  Anything (within the realm of moral of course) that gets people involved and inspired to donate to a good cause is a worthy endeavor.  It is difficult to inspire people to lighten their wallets these days, even for a good cause.  Wise challenge participants have been asking for those challenged to play as well as donate and those not challenged to consider making a donation.

On a personal note, the Ice Bucket Challenge has been a fun diversion for my family this year, as I mentioned above we lost my dad to ALS in October.  For the last 3 years around this time I would call Dad and ask “when are you going to start the walk donation page?”  You see, during Dad’s illness an organization called ALS of Michigan really helped my family.  They have equipment closets filled with tools for ALS patients to borrow and return.  When you have ALS you need a lot of expensive equipment and depending on your disease progression you can go from one piece of equipment to another quite quickly.  For instance, ALS patients can go from cane, to walker, to scooter, to wheelchair within the span of a few months. 

ALS of Michigan lends these tools to pALS (people with ALS) and they exchange or return them as necessary.  The wonderful workers at ALS of Michigan even helped my mom find and figure out a portable shower chair in 2012.  This chair allowed my dad to travel to New York for my Masters program graduation.  You can’t really put a price on that can you?

Each year ALS of Michigan hosts an event called the “Walk & Roll.”  It is their biggest fundraiser of the year and The Joyful Jaywalkers (my dad’s name was Jay…cute huh?) begin fundraising as a team at the beginning of August for the walk on the last Sunday of September.  This year the early days of August ticked by and my fingers ached to dial up Dad and ask “when are you going to start the walk donation page?”  Sadly, he isn’t there to answer and though we are all committed to fundraising this year, no one was very motivated to step into Dad’s place and start up our 2014 team.  The 2013 walk was two weeks before my dad passed away.  It was the last place many of our friends and extended family saw him alive and it will be the last of our “firsts without dad” in this horrible year of adjustment.  Starting the fundraising, whether or not we admitted it to each other or ourselves, was a daunting and emotional task.  Denial was the way we all chose to handle these emotions, until about 2 weeks ago.

This was when our friend Vince was challenged to dump ice water on himself and dedicated his video to my father’s memory, and it went from there, friends challenging friends: everyone talking about my dad, how great he was, how much they miss him, and asking for donations to fight ALS.  It may sound silly, but watching friends and family take an ice shower in honor of Dad really warmed my heart.  It was also the perfect catalyst for our campaign, my siblings all accepted when my brother was challenged, and decided to dedicate our video to all of the wonderful people we lost this year to ALS and those still fighting.  When your family is personally impacted you meet and grow to love many others with the disease, so the list was long.  My sister set up our team fundraising page and we told everyone about the walk in our video.

The challenge is certainly silly, but what are we Americans if not silly right?  And is there anything wrong with being silly for a good cause?

My hope is that this challenge will inspire people to learn more about ALS and support great organizations that help patients and families.  ALS of Michigan is one of those organizations, if you are inspired please click the link below and support the Joyful Jaywalkers in 2014.

https://ssl.charityweb.net/alsofmichigan/walknroll/theresaspranger.htm

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.