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!

What a Wonderful World It Would Be…

Earlier this week my dad had surgery.  He has ALS and has recently been experiencing pulmonary issues from a weakening of his diaphragm.  The surgery was for the placement of a diaphragmatic pacer.  Basically, he has wires running through his diaphragm muscle, and they gather into a plug on the outside of his abdomen.  He can exercise the diaphragm by connecting to a wall outlet.  The electricity allows the pace maker to move his muscle up and down.  

He is one of about 500 people who have had this new surgery.  It was originally developed for patients with spinal cord injuries, but it has been approved by the FDA for humanitarian use in ALS patients.  The pace maker has been seen to slow the deterioration of the diaphragm muscle in ALS.  It helps some patients stave off the dreaded ventilator and is assumed to help lengthen the life and enhance the quality of life for the patient.  

Being a patient’s family member at a hospital is a change for me and I am always watching closely to be an advocate for my loved one or to pick up tips if I am impressed with how the workers handle situations.  My observations on these days often end up in my posts.  I believe patient advocacy and interacting well with patients is a vital, but often lost art in medicine.  See my post "Otherwise Alone" for the tale of my aunt and her hospital admission after several mini-strokes.

That post was one of disappointment in the hospital staff; this one however is going to be far more uplifting.  I saw some truly wonderful things at Henry Ford Hospital in Detroit and believe praise should be given generously and that other medical professionals (myself included) can learn from members of their team.

Dad was the first surgery of the day and taken in right on time.  Some of the staff were kind enough to overlook the extra two family members huddled around Dad’s bed in pre-op, that is until his nurse came and cut the party in half.  She didn’t make a great first impression. (lesson: watch the tone, when talking to patients, even when…no…especially when enforcing the rules)  However, she later proved herself to be incredibly kind and thoughtful.  As they wheeled Dad away, Mom and I (the only family left in pre-op) were rather emotional watching him go.  It’s been a long and painful journey on this ALS road and the surgery was another scary step into the unknown.  The nurse was so kind; she put her arm around Mom and assured her that Dad had one of the best surgeons in the hospital and he would take very good care of her husband.  The nurse was calm and patient, she was truly empathetic and nurturing; in total, she was a credit to her profession.

The surgeon had given us a timeline and appeared to speak with us right on schedule.  The surgery had gone perfectly; Dad was breathing on his own and should be awake and able to have visitors within an hour.  The surgeon answered all of our questions and in no way gave the impression that he had anywhere else to be, though I know from experience that he probably had several things on his list that day.  He took time to talk to us about the new device, how we would be trained, and validated our desire to have more than one family member at the training.

Though this surgery can be outpatient, Dad’s surgeon likes to watch his ALS patients overnight to make sure they are not having complications.  Dad was admitted quickly to his private room.  Mom had told the staff earlier that she intended to stay with Dad overnight and that we had his motorized wheelchair with us.  So, when he was admitted he was given one of the biggest rooms on the floor, complete with a couch and extra pillows and blankets.

Dad’s nurse and nursing assistant continued the great care.  His nurse told him about a project she had done in school regarding ALS patients and that she had specifically requested to have him as a patient.  She specifically requested the complicated, wheelchair bound, ALS patient?  Outstanding…I certainly haven’t seen that before.  The last time Dad was admitted to a hospital they didn’t know what to do with him and kept trying to ignore that fact that he had ALS…um…it doesn’t work that way guys…it would be cool if it did, but it definitely doesn’t.  What a refreshing change to have a nurse who truly wanted to care for him, in spite of the complications ALS brings to a hospital stay.

The nursing assistant was another home run, she was Mom’s favorite member of the team: cheerful, hardworking, and helpful.  She never made a sour face when asked to do something, she was eager to help, and willing to allow Mom to help her with some of the tasks.  This was fantastic, Mom takes care of Dad every day and allowing her to help made Dad more comfortable and allowed Mom to pick up some tips on “how the professionals do it.”

At the end of surgery day, the surgical resident came in during his rounds.  Mom and Dad had seen him about 12 hours before and commented on his long day.  He cheerfully said it was normal and he would probably be on his way home in a half hour or so.  He did not give off any of the rushed, overworked resident vibe I so often see.  In spite of his long day, the fact that he was on call, and would have an even longer day tomorrow he sat and chatted with Dad for almost 15 minutes.  He talked about the surgery, how dad was feeling, and reassured him that the shortness of breath he was experiencing was expected and would resolve.  He treated Dad like a friend and chatted with him about why he chose to be a surgeon, he answered all of Dad’s questions about residency and the path to becoming a doctor like it was the first time he had heard them, and then told us about his future plans for his career.  My dad is a social butterfly and can make friends anywhere, with anyone, but it isn’t often you find a physician who will take the time for a conversation like that at the end of a long workday.

Overall, I was extremely impressed with the care and attention given my Dad at Henry Ford this week.  Mom spoke with one of the nurses about the care and how much we had all appreciated their kindness and compassion.  The nurse told her that at Henry Ford they were trained to treat each patient like they were your only patient and give every interaction your full attention.  What a wonderful way to train your employees!  In my opinion it is working well and other hospitals would do well to adopt this policy.

There is no deep bioethical analysis in this post, but I think it is important and can be inspiring to look at the successes in patient care.  Henry Ford cares for the whole patient as an individual, emotionally as well as physically.  This is a monumental task and they made it look effortless.  Imagine if every hospital experience were like this one…

Otherwise Alone

Walk with me a moment…you are an 80 year old widow, live alone, a quiet life, with your popcorn and politics, and suddenly something changes.  The left side of your body is not moving quite right and your thoughts seem slower…foggier.  A kind neighbor convinces you to go to the hospital and this is where our story really begins…

“Ma’am, you need to be admitted, is there someone we can call?”

“No”

Scared and alone you learn that you have had several mini strokes, that you need tests, and possibly surgery…but that’s not right, you are healthy, strong, independent.  Tests and surgeries?  You have never needed them before…maybe you don’t really need them now.  80 is a good long life…and it has been a good life…I mean, what’s the worst that could happen?  Death?  That doesn’t scare you, not as much as those tests…and surgery. 

So you tell the nurses and doctors: no tests, no pokes, no prods, and certainly no surgery.  Suddenly, the mood changes, the nurses once kind and calm are now testy and aggravated.  The physicians, who are supposed to be explaining the situation, are frustrated and condescending.  Don’t they understand?  You have lived a good life and now it must be time to go.  It’s like you aren’t speaking the same language…why won’t they understand?

The star of this tale happens to be my darling aunt, and thankfully this story has a happy ending.  Her favorite niece (me of course)…you don’t believe me…who’s telling this story anyway?  As I was saying, her favorite niece happens to speak fluent “medical-ease” and was able to broker a deal between clinician and client.  She had the tests and surgery and is happily back to her popcorn and politicking.

As a clinical research coordinator at an oncology center, I interact with very ill patients every day.  After my aunt’s experience, I never looked at patients who came to the hospital alone in the same way.  I believe more than ever that every patient needs an advocate.  It doesn’t matter how brilliant or independent you are in everyday life, when you are truly sick you need a buffer, a neutral set of eyes and ears to help control the situation, to make sure that everyone is speaking the same language.

Years ago, another aunt was the first to tell me I had a talent for this translation, she had recently been diagnosed with diabetes and was home, still not having any idea what that really meant.  I was a science undergrad at the time and was able to bridge the gap for her.  As a reward for my efforts she dubbed me the official “family medical translator.”  This experience taught me a valuable lesson about how patients may act like they understand their diagnosis when at the physician’s office, but ultimately leave confused.

As medical professionals, it is certainly difficult to know where each individual patient is coming from, but some general assumptions can be made when you are talking about serious, terminal, or emergency health issues.  In these cases, you are likely dealing with someone who is both scared and overwhelmed.  When we live this life everyday it is easy for our patients to blur, for us to forget that they are more than just sick and in need of care, but are complete lives, with stories, ups/downs, family and friends. 

Also, it is easy to forget, when we work in a hospital or with the terminally ill, that this day is unique and intense for each of our patients.  It was once explained to me like this: when we as medical professionals walk the hospital halls our world is in black and white, it is our routine and we will remember today no more than yesterday, but for every patient we meet, that day is being lived in vibrant color and will be forever branded on their memory.  I try hard to remember this when I interact with patients at the hospital, on some days and with some patients it is easier than others. 

In the medical community, we should make a concerted effort to better understand and recognize the emotional needs of patients.  This may mean you sit and chat with a patient for an extra few minutes, or help translate between them and a clinician, or kindly encourage them to call a friend or family member for support.  All patients can benefit from this, but we should try to be particularly aware of the emotional needs of those patients who are otherwise alone.