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…

Portrait of a Litterer

Heather Dewey-Hagborg is an American information-artist who, for her latest project, roams the streets of New York looking for cigarette butts, chewed gum, or strands of hair.  She collects the samples, extracts DNA, and has the DNA analyzed in a lab for certain genetic characteristics (race, gender, eye color, etc.).  From these results she uses a computer program and 3D printer to create a 3-demensional image of the person’s face.  Ms. Dewey-Hagborg says that her sculpture is more of a loose representation of the person rather than an exact portrait.  The capability to create an exact portrait may be available in the future, but at this time the analysis needed for that is too sophisticated for our technology.

The idea came to Ms. Dewey-Hagborg from a single strand of hair she found stuck in a cracked piece of glass.  She wondered whose hair it was and what that person looked like.  Ms. Dewey-Hagborg has spent the past year designing the computer program and creating her 3D portraits.  She calls her project “Stranger Visions.”

This project sparks many interesting ethical thoughts and issues.  We shed DNA everywhere we go, every time we scratch an itch, sweep our hand through our hair, lose an eyelash, etc.  The “Stranger Visions” project brings up some interesting thoughts on the use of discarded genetic material.  For instance, how could this technology be used by: a government, scientist, or police force? 

Could the police force use this technology in their investigations?  Perhaps it could be used instead of or in conjunction with sketches from witness descriptions?

Scientists could use the information for statistical analysis and profiling.  An oversimplified example of this could be the title of this post, “Portrait of a Litterer.”  Litter could be collected as this artist has done, but then analyzed to profile and answer some questions about those who litter.  Who is more likely to litter: men or women?  Are litterers more likely to have blue eyes?  And so on… 

Certainly, the usefulness of the littering example is questionable, but the idea could certainly be transferred to other areas, the possibilities are endless.  The question however: is this type of use ethical?  Do we want statisticians to be able to collect genetic information for profiling?  What rights do you have to samples of your DNA if they are no longer attached to your person?  A host of questions spring to mind, questions with few good answers.  It seems evident to me, that our discussion in society is falling behind technology in the area of genetics.

In my opinion, we need to quickly catch up in our discussion of genetics.  As technologies become more and more sophisticated, the use of our personal genes could become a forefront issue for our society.  We cannot help leaving traces of ourselves behind us for anyone to gather and do with as they please.  So, how do we prevent our genetic information from being used for something against our will?  Is there a way to adequately legislate on this issue?  Should we legislate?  Do we own the hair, skin, saliva, etc. that contains our genetic information?  The questions and strange possibilities this project presents to us are truly endless.

While I believe this project is fascinating and harmless in itself, it should spur us to deeper thought and conversation on this issue of genetic material: ownership, and use.  It should also encourage you to find a trash bin for your gum and/or cigarette butts lest you find your face on an art gallery wall…

Want to know more?   Here are links to some interesting articles…

http://petapixel.com/2013/05/06/artist-uses-found-dna-data-to-generate-photo-realistic-portraits/

http://www.theblaze.com/stories/2013/02/09/artist-reconstructs-faces-using-dna-left-behind-in-nyc-and-a-3d-printer-considers-implications-of-genetic-surveillance/

Philly’s Little Shop of Horrors

All week I have been reading opinion pieces about Kermit Gosnell, knowing full well that this topic is right in my wheel house waiting for me to make the pitch.  However, I have felt like I have nothing new to offer to the conversation short of juvenile comments about how the man shares his name with a small green puppet.  Which, let’s be honest, those are not constructive…funny, but not constructive.

So, here’s what I have come up with: this is a horror show.  I don’t want to: know about it, think about it, read about it, hear about it, or have “jars of baby feet” or “frozen fetuses” anywhere in my consciousness.  I don’t even want to write about it, but here we are…

It seems that everyone who has heard, read, or written about this story has had a visceral reaction.  It’s gross!  A dead infant with a severed spinal cord kept in a freezer is the stuff of CBS’ Criminal Minds, not the daily news.

I assume everyone is familiar with this story, but let me give you a quick summary in case images of Mr. Gosnell and statistics about his “clinic” haven’t invaded your Facebook newsfeed all week.  Kermit Gosnell is an abortionist in Philadelphia, who performed late-term abortions (abortions after 20 weeks of pregnancy).  His clinic was raided by the FBI in 2010 and they found an absolutely appalling state of affairs.  The clinic was filthy and smelled of urine.  There were blood stains on furniture and blankets, aborted fetuses in containers, and a jar of severed baby feet.  Gosnell also had a patient who died on his table and it is suspected that several women contracted venereal diseases from the unsanitary conditions of his medical equipment.  If that weren’t enough, he is accused of infanticide, it is said that in some cases he waited until after the live birth to sever the spinal cord of the infant.  Like I said, gross.  The most complete article I found was on The Daily Beast and if you are a masochist like me and want more information, here is the link.

The big controversy in this case isn’t the state of affairs at the “clinic” or Gosnell’s procedures, he seems to be very clearly outside of the law, and some (me) may even use the word sociopath.  The controversy is that the media didn’t cover this story well enough, personally I can’t blame them.  I tend to think this is news worthy to our society, but at the same time nothing about this story really surprised me.  If a man is willing to perform a late-term abortion, wouldn’t he naturally also be unopposed to infanticide?  Furthermore, if a man cares so little for the life of a viable infant, why should we expect him to respect the woman carrying said child?

I come back to an article I wrote a little over a week ago, Stripped For Parts.  In this article I explained how our societal view of life is illogical.  If we really look at this horrible man his actions were logical according to his beliefs.  He has no respect for life: the woman in his waiting room, the child she carried or delivered, or the body of that child once he/she had died.  Please do not misunderstand me, I believe this man was a sociopath and deserves the absolute worst our society has to offer him, I am merely trying to make the point that his actions should not surprise us. 

If you are a supporter of late-term abortion and his actions do surprise you, please ask yourself why.  Why does it matter that the infant had drawn breath?  Is there really an ethical difference between severing the spinal cord before or after this breath?  The act is still the same, the labor pain of the woman unchanged, the viability of the infant exactly the same, the difference is a moment in time and a literal breath of air.

There are few things in this world I find more appalling than the abortion of a viable fetus.  The child in question no longer requires the shelter of the womb and at the last possible moment before freedom his/her life is stolen in a flash of blinding pain.  Can you imagine something more innocent being subjected to something more brutal?  Any person who can perform this act day in and day out is capable of great evil and nothing he does should surprise or shock us.

So, there it is, pitch thrown…

The Struggle

On Thursdays I watch my nephew during the day.  He is nearly one year old, he is spirited and playful and like most little ones hates nap time.  We have our weekly routine of pacifier, blanket, Matt Maher on the stereo, and Aunt T snuggles on the way to dreamland.  As he gets older he fights harder and harder to stay awake.  His tired eyes stay triumphantly open and his little arms push fiercely against my embrace.  My strategy in these moments is to “play dead” in a sense.  This morning, knowing how tired he was and how desperate for sleep, I sat on the floor, holding him close I leaned my back against the bed and closed my eyes.  While Aunt T pretended to sleep Isaac picked his head up and looked around the room desperately searching for something interesting enough to keep his eyes open.  About two Matt Maher songs in his little head became too heavy and plopped down on my chest and there we lay for another song in perfect peace, harmony, and surrender.

As I sat on the floor with my eyes closed waiting for him to surrender to the exhaustion, I thought of our relationship with God and the parallels to my nap-time experience.  In this scenario we are Isaac and God pulls us close in a captivity that is for our own good.  If we surrender to it we find rest and for brief moments perfect harmony with Him.  Yet, we struggle, we see His embrace as constricting, a limit to our liberty, we don’t think we need the rest, besides the call of the world is so inviting:

 “Haven’t you heard about the sexual revolution, we have birth control, abortion if that fails…do what you feel.”

“Happiness lies in money, power, and fame.  Work long hours or do something outrageous to get noticed.  Kindness, compassion, and respect are things of the past; you want fame, money, and power.”

“You should have the best: new furniture, big house, nice tv, great phone.  All of the best things, see he has them, and you deserve them too, just swipe that shiny, plastic card, it’s ‘instant happiness’.”

While the world whispers her lies to us, we wander her streets exhausted, our life passes in a blur before droopy eyes.  We fight rest and God’s embrace with everything in us.  He blesses us when, as I did with Isaac this morning, He sits on the floor and won’t let us go.  We crane our necks and look around and around at all we can see, fighting hard against His arms of morality, but there He sits “sleeping” and setting the example of rest for us, until we can finally succumb to His embrace and find that freedom is sweetest when you surrender to the one truly loving authority.

Hearts and Minds

A year ago today I lost a very dear friend.  She was loud and opinionated and we agreed on almost nothing, which is what made our relationship fun and exciting.  Gail had been a client of my mom’s since before I was born (my mom is a hair dresser) and we would see her every six weeks like clockwork.  She always took a special interest in my sister, brother, and me.  When we were kids she would ask about our lives and in high school I would haunt the basement during her appointments to visit with her.  She always wanted to know what I was up to, where I was headed in my life.  Through the years her consistent interest helped to keep me focused and on track.  As I got older, I would go to Gail’s, rather than the basement, to hone my debate skills.  On Sunday afternoons we would talk about: science, ethics, politics, social culture, medicine, work, school, boys, you name it we covered it.

If we landed anywhere near politics in our debate you could guarantee Gail would take the opposite side I was on and we would point/counter-point for hours on end.  We never changed the other's opinion, we never intended to, but through the tough questions and difficult scenarios that she presented me I was able to understand my argument more deeply and feel confident to defend it to a harsh world.

Gail believed in me, but not to a fault, she was a person who was willing and able to point out your shortcomings, while highlighting and encouraging your strengths.  I would tell her my half-brained schemes and she would tell me which bits weren’t so “half-brained” and then tell me to chuck the rest. J

She had Scleroderma and spent the last few months of her life in hospitals and nursing homes.  During this time I was honored to help her with some of the tough medical and life decisions.  She was a woman who truly believed in my abilities in my field, sometimes more than I believed in myself.  Our Sunday visits definitely helped get me through grad school and one of them even inspired my master’s project.  Thank God, because up until the day before the topic was due I hadn’t the slightest idea what it might be.

I miss her today.  She would have gotten a kick out of finding the soft points in my blog arguments and keeping me on my toes.  Thinking about her and those wonderful Sunday afternoons made me remember why I wanted to do this in the first place: it’s the thrill of the fight.  I want to strengthen my own arguments, dive into my own opinions and make sure they are right.  I want to hear advocates of the other side do the same thing.  I didn’t get into this field to prove I’m right or because I think I’m the smartest person in the room.  I do it for personal growth and the opportunity to awaken those sleeping on these issues, to inspire them to find their passion, and change the hearts and minds of the disinterested.

Stripped for Parts

There is an article on Daily Mail about eggs from aborted human females being used In Vitro Fertilization (IVF).  The idea is that the ovaries of the aborted female would be harvested and the eggs cultivated in a lab and then used in IVF treatments where a donor egg is required.  Ultimately, this would lead to the birth of a baby whose biological mother was never born.

I haven't read any of the study results first hand, so I cannot speak to the scientific accuracy of the article.  Therefore, let’s discuss the issue purely as a hypothetical.

There are several ethical issues involved with harvesting eggs from an aborted fetus:

1) How do you tell a child (or an adult person for that matter) that their biological mother was never born?  This would be incredibly difficult for a person to process.  Imagine the feeling of knowing that you were given a life to live because your mother died, that you were given a life she never got to experience.

2) Who owns the genetic information contained in those eggs?  At this point in our society we do not grant the rights of person-hood to the unborn.  So, do we give the right of donation to the woman who had the abortion?  Is the body of the unborn child her property once it leaves her body?  Is it ok to use these eggs with permission from no one?  What kind of genetic testing will be done?  How will this information be used?  There really is no end to the questions and I don’t see how an adequate solution can be developed.  Keep in mind that to give donation rights to the mother alone would be an issue because it isn’t her genes alone she is donating; it is also the genes from the father.

3) Both 1 and 2 are major ethical hang-ups in my opinion, but what I would really like to talk about in this post is the dichotomy in our society regarding the issue of life.  Consider this scenario:

Jane is 19, in her first year of college, and discovers she is pregnant.  She decides this is not the time for her to have a child and she has an abortion.  Jane was carrying a little girl and at the abortion clinic they ask if she will donate the ovaries from that little girl.  Jane decides to do this; the nurse tells her all about how the eggs she donates will help a couple in need conceive a child.  Jane wants children someday, just not now, and she hates to see anyone who wants a child denied one.  Plus, it means that this whole ordeal wasn’t for nothing; it had a purpose, right?  She feels sort of empty and alone now that everything is done, maybe donating the ovaries will help bring her closure and make that empty feeling go away.

During this time, Tom and Mary are deciding what to do next.  They have tried everything imaginable to conceive and are left with two options: adoption or IVF with a donor embryo.  They consider the pros and cons.  Adoption can take years and there is always the chance that the mother will change her mind.  Can we deal with that they wonder?  They have been at this for 3 years already.  IVF on the other hand…it’s expensive sure, but they can start soon and maybe have a child by next year.

Tom and Mary go to the in vitro clinic and choose to use eggs from Jane’s aborted fetus.  The treatment takes and 9 months later they have a healthy baby girl.  Effectively making Jane, who thought she was too young to be a mother, a 20 year old grandmother.

The fact that we would consider using eggs from an aborted female highlights a real problem in our society: we are confused about life.  We seem to define life as that which is “wanted.”  This is illogical.  How can we justify valuing the eggs (and the life they can potentially produce) more than we value the human girl they came from?  Her little body was simply tossed aside after being stripped for parts.  On one end of the spectrum we are literally tossing life in the trash and on the other we are painstakingly and expensively creating it in a lab.

In our story, Jane wanted to donate the eggs to help a couple in need.  What if she were told about the amazing gift she could give a couple, as well as her unborn child, by choosing adoption?  Would Tom and Mary have been less excited to have this little girl?  Remember, they only decided against adoption because it is an arduous, bureaucratic nightmare, but isn’t there a way to fix that?  And wouldn’t it be well worth our time to help parents waiting for children more quickly find the children who need parents?

A world in which unfertilized eggs are worth more than a growing female fetus is a world confused and conflicted.  We create the very thing we have just destroyed.

I tire of the legal/illegal argument regarding abortion.  Most people, regardless of how they feel about the legality of the procedure, agree that abortion is not ideal and should, at the very least, be rare.  Let’s get creative and have a discussion about how to make abortions rare or even unnecessary.  By changing the conversation and making adoption a decision to be praised and honored in our society we could decrease the overall number of abortions and fix a bit of the confusion in our society about life.

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.