Malpractice and Reconciliation

This past week I escaped up to our cottage for a blissful day and a half of solitude.  It is a three hour drive each way and I often enjoy passing the time by listening to audiobooks I borrow from the library.  As a doctoral student (though on leave right now) I spend a lot of time reading required material and I often have little time to consume the murder mysteries and popular fiction I enjoy.  So listening to books while driving is a wonderful opportunity to indulge my love of reading.

 

This week I had borrowed John Grisham’s Calico Joe from the library.  Spoiler alert: If you don’t want to know the gist of the story stop reading now.

 

Calico Joe is the story of a pitcher who deliberately hits a superstar rookie batter in the head with a fastball pitch.  The pitch hits the batter’s eye and seriously injures the young hitter. An expected brilliant career ends abruptly.   Reconciliation is a significant theme of the book and the book ends, thirty years later, with a meeting between the pitcher and the batter. I remember being envious of the characters of the book for that meeting.

 

You see, my son’s disabilities and medical issues are the result of medical malpractice.  Granted the physician did not deliberately injure my son the way the pitcher injured the batter.  But, like the batter in the story, a serious injury happened and led to not one, but at least two, radically changed and restricted lives.

 

And then today this  article scrolled across my Facebook page.  Briefly, it is an article about a physician who admitted to lying in a medical malpractice case to protect a colleague.   The article got me thinking, once again, about malpractice and the ensuing response by the medical establishment.  For the record, I don’t I believe that the physician in our case lied.  It was the comment in the article about the fact that members of medical communities live with a powerful code of silence about medical mistakes that leapt off the page at me. Mistakes are not discussed, particularly with any patients involved.  There is little opportunity to speak up, or speak to, patients who were involved in a medical mistake.  While there is much discussion these days about the importance of dialogue and apology I genuinely wonder how often that happens in very serious (and, thus, expensive) cases of medical malpractice.  It did not happen in our case.

 

Last week the daughter of the physician involved in my son’s birth served my husband cookies at a school function.  We move in a small community.  My husband was unfazed, but for a split-second it hit me.  No one in the crowd would have noticed it.  But I did.

 

I like to believe that I have long-since made peace with our particular situation and I have long-since forgiven the physician for his involvement in my son’s very severe injuries.  For the record I, personally, don’t think the physician involved is incompetent.  I think he made a mistake.  He is human and not God ergo mistakes are inevitable.  It was just too bad it was us in the room.

 

Our malpractice case concluded several years ago. It was awful and I say that even though, officially, we “won”.  When it comes to our medical litigation I have never felt like a “winner”.  In many ways I think we all just stumbled through a journey of losses.  Living through litigation was one of the worst experiences of my life.  It was more stressful than the stress of being an extreme caregiver, which is significant I might add. Much of my bitterness and disillusionment about the experience, though, is directed to the legal/insurance system rather than the medical system, or the particular physician.

 

But Calico Joe got me thinking, again, about apologies and reconciliation.  I would have been (be) open to such a meeting, but in the midst of litigation such meetings are impossible.  In the aftermath of litigation it seems that they just don’t happen. I am not sure why.  Financial awards are not apologies.  Funding is not reconciliation.

 

I think I would welcome such a meeting.  I would like to hear an apology and to personally tell the physician that I am not angry at him, only sad that things happened the way they did for us, and for him.  I cannot imagine living through a malpractice trial as a physician was any less difficult for him than it was for us.  I would like to be able to see him at our children’s school without my  heart stopping, even for that split-second, wondering if he saw me .  I have considered writing to him via his office, but I am too afraid of the response, or lack thereof, I might get.  Though there are times I wonder if he, too, might find such a meeting healing.

 

It is a tragedy that the powerful medical, insurance, and legal stakeholders make something as healing and human as an apology and reconciliation virtually impossible.  I applaud physicians such as Dr. Lars Aanning who are speaking out, not only in cases where a physician made a mistake, but also about the code of silence that interferes with good, human care – both before a mistake, and after.

 

 

Caregiver Guilt Trip

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I subscribe to several caregiving blogs and as a result I have the opportunity to read a number of caregiving articles daily.

 

Last week a blog post entitled “Preventing compassion fatigue is up to you” scrolled across my facebook page.  You can read the post here.

 

Compassion fatigue is the idea that caregivers, both paid and unpaid, gradually become desensitized to the suffering of others over time.  Compassion fatigue was first noted in nurses who were becoming immune to the suffering of their patients.  The author of the blog post suggests compassion fatigue is a form of burnout despite the fact that most caregiving ethicists and researchers separate compassion fatigue and burnout as two distinct concepts.  I found that the author’s blog post unhelpfully conflated the ideas, but I digress.

 

 

The post is full of “helpful” suggestions to combat compassion fatigue. I should probably admit my own personal bias at the outset.  If find such checklists annoying, simplistic, and often condescending.  The notion that we can take a highly complex and demanding situation and “fix-it” with a checklist is frustrating, even patronizing. Extreme caregiving, is, well, extreme and the strategies to effectively deal with the ensuing compassion fatigue and burnout will likely be equally complex, holistic, and nuanced.

 

One key problem is that for extreme caregivers such soundbite strategies can border on impossible.  Like, get out for a walk.  Great idea. Most extreme caregivers would love to get out for a walk, or coffee date, or what-have-you. But many extreme caregivers would need to hire a nurse to do so and most families don’t have that kind of spare cash sitting around.  And then there is the suggestion that you talk through your feelings with a friend, but don’t tell them too much lest you burn your friend out.  HUH????  Nothing like perpetuating the feeling among caregivers that everyone else’s needs override theirs.  And then the author suggests asking for help. Does the author have any idea how often the request for help by extreme caregivers is answered with an explicit, or implicit, “no”.  People are often willing to help once or twice – drop off a meal, or a prayer shawl, or walk the dog –  but few outside of paid professional are willing, or able, to offer the necessary support required by extreme, and chronic, caregiving situations.  Caregivers are often badly isolated.  Who does the author think the caregiver should ask?   As the author insinuates, even very good friends struggle to sustain the supportive companionship an extreme caregiver may need for prolonged stretches of their journey.

 

In short, I found the offered suggestions both simplistic and naive.  In short, they are easy, unlikely answers to a highly complex problem.

 

Among extreme caregivers preventing burnout  or compassion fatigue is often not as simple as taking a walk or talking it out.  Yes, these might help, but the real answer is much more complex.  Extreme caregivers, I would suggest, need the sort of help embodied in the African proverb, “it takes a village to raise a child”.  Extreme caregivers need not only the people in their immediate community, but the entire society, to commit to walk the journey with them for however long they are required to walk.  Extreme caregivers need support to show up day after day.  Possibly indefinitely.   And, for the newly emerging population of extreme caregivers managing nursing level care 24/7/365 the support they require includes generous, publicly funded nursing and caregiver support – an unpopular suggestion in a time of fiscal restraint.

 

There are some caregiving situations that are, without significant supports, unsustainable despite the fact that our society insists caregivers manage.  Heaping guilt upon an already overwhelmed caregiver by telling them their burnout is their fault is counterproductive.  Many caregivers are already struggling with the unspoken sense of shame associated with the knowledge that they cannot sustain the level of care their love one needs.  In my opinion blog posts like these not only NOT  help, but become a guilt trip.

 

 

Mothers and Stigma

A few days ago the following meme scrolled across my morning Facebook feed and got me thinking about the expectations we heap upon parents, particularly mothers.

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There is a cultural narrative that tells us that there is no sacrifice too great when it comes to the raising and care of our children.  That to suggest that the sacrifices associated with parenting are too demanding means that the parent is selfish. And there is no doubt that many women, even women not raising children with complex medical needs or disabilities, make huge personal and financial sacrifices when it comes to parenting their children. I don’t want to minimize that fact.

 

I think most reasonable adults understand that raising a child, or children, will radically revise their lives. Most of us do so very willingly because being a parent is more valuable than any lost opportunities. But for most parents these sacrifices ease as children become older and more independent. The average parent, as the years go by, gets a decent chunk of their life back. They can return to work or hobbies, will sleep through the night, and so on.

 

But what if the care of your child truly required you to give up almost everything. For decades, perhaps even the rest of your life. Where the only hope of regaining some semblance of your life rested upon your child’s death or the relinquishing of your child to others. This is the life of an extreme caregiver.

 

What if your child required you to leave your job and miss out on social activities and valued hobbies – not for a few years until they started school but for most of your adult life.   What if you child’s care meant that you didn’t sleep or eat regularly, never knowing when you would sleep for eight hours or eat a meal while still hot. And this reality won’t end with the toddler years but will continue indefinitely. What if every day and night of your adult life was filled with lifting, and diapers, and screaming, and medications?  Every day.  Every night. What if your child’s care meant financial difficulties to the extent that you are forced to make choices between purchasing your child’s badly needed medicine, and some other needed commodity like your medicine, or groceries, or a mortgage/rent payment? What if this happened every month?

 

This is what extreme parenting looks like for many mothers. Yes, there are some men out there who are primary caregivers, but statistically speaking the extreme caregiver is almost always a women. And mothers offer this care, yes, because they love their child without measure. But also because society offers no other choice. Society is abundantly clear that mothers are expected to sacrifice everything for their child even if that request is “too much” for one person. To not do so implies that you are selfish and society is standing by waiting to heap judgment upon that parent.

 

Memes like the one I shared above perpetuate this idea that there is no demand too difficult when it comes to caring for one’s child, when in fact, there are some parenting journeys that are indeed more than one person can possibly sustain. In fact memes like the one above can serve as a guilt trip for an overwhelmed mother questioning how much longer she can go on.

 

I don’t want to get into a competition of suffering here. Many parents make hard choices when it comes to parenting a child and I don’t want to be unfair to them. My point here is that for extreme caregivers a) there has been no choice, b) the sacrifices are all encompassing and without hope of reprieve, c) the care is more than one person can reasonably offer, and d) society offers no option for a parent, particularly a mother, to identify they have reached the end of their rope.

 

Not only does our society not offer a mechanism to share that the sacrifices have become too burdensome, but our cultural narrative is built upon memes like the one above that romanticize sacrifice without understanding that sacrifice can exist on a spectrum and that there are points on that spectrum where it is very reasonably “too much”.

The diaper dilemma.

In 2014 there was a heated online discussion about whether the following picture was appropriate.  In this photo we see James Lee carrying his sixteen year old son, who lives with severe disabilities, to the shower.  The image was part of a series authored by NPR exploring the demanding lives of caregivers.

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There was considerable response to the photo, including more negative responses than were expected.  So NPR published a follow-up discussion you can read via the link posted here.

I remember being generally indifferent about the picture.  This image is lived out in my home every day. Heck, we talk about poop at the dinner table.  This morning’s breakfast conversation discussed the timing of enemas.

I did, briefly, wonder if the picture was disrespectful to the Lee’s son who cannot consent to images that might be posted publicly.  But, as an extreme caregiver trying to illuminate the hidden and unspoken world of caring I believe that images like these go a long way in communicating the fact that the caregiving many parents offer is unsustainable.  Sadly, answers to caregiving crises are complex and expensive, so the crisis largely remains. In short, I felt the benefits of sharing the image overshadowed any downsides.

I remembered this picture and the divisive discussion today as I posted this picture of diaper clad Matthew on my Facebook page.

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During his morning care our puppy, Archie, joined him in bed and came to rest on top of Matthew.  I thought it was adorable and snapped a picture which I then shared with my greater Facebook community.  The response was universally positive.

But yet I am aware that many people who live with disabilities might take exception with this photo being published online.  Their comments would, perhaps appropriately, point out that Matthew could not consent to his image in a diaper being posted.  They might suggest that I was being disrespectful sharing such an intimate moment  They might, rightly, worry about this image perpetuating negative stereotypes about people with disabilities as drooling, diaper clad individuals.

But there’s part of the “catch”.  My son drools.  My son wears a brief (or diaper).   It is who he is and for him, and us, it is normal and I see nothing shameful about either. Rather than hiding him away from eyes that might be offended by such images I want the world to become comfortable with different ways of being.  I also want the world to begin to understand the extreme level of care that many caregivers are providing behind closed doors.  Until that care becomes more visible the caregiving crisis recently discussed in the Ontario Ombudsmen report exploring care for adults with developmental disabilities will remain acute.

My son’s image is not immodest.  He is wearing far more than many posters on Facebook.  For Matthew, a brief is both normal and necessary, and this image is pretty darn cute.  To those who take offence I would suggest you get over it!

 

 

We’re back!

 

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Summer is over and we’re back to normal life, some of us as you can see, kicking and screaming!

There are many ways I can tell that summer is over and fall is nigh.  The students return to our university town.  We begin to see the early stages of construction of the Oktoberfest tent.  The kids go back to school and the snowbirds we know begin packing for their exodus south.  And we begin to worry about Matthew’s health again.

Summer is often a pleasant hiatus from any serious health concerns for Matthew.  Communicable viruses seem to wane and he generally enjoys a stretch of good health and medical stability.  For medically fragile children the fall return to school, day programs, and activities, while fun, also signals a return to larger crowds of people sharing germs in confined spaces.  And for our kids minor bugs that other kids weather with little difficulty can wreak havoc.

Like clockwork yesterday we got the call.  Summer is over, after all.  I had just finished a karate lesson, one of the few “me” moments in my busy week, and the nurse called from Matthew’s day program.  He had been irritable all day.  He was running a low grade fever.  His oxygen SATs have been on the low end of normal all day and not rebounding.  It’s likely nothing acute but the day program was worried something was brewing. Please come and get him.  So Matthew is home today, and as you can tell by the above picture, not particularly happy with life.

Awesome!  (said with serious sarcasm).

Tomorrow I am off to London for the day and Saturday is my husband’s 50th birthday celebration.  Matthew’s timing, as always, is impeccable.

I normally love fall.  I love pumpkins, and crisp fall days, and sweaters, and tea, and hikes through orange and red forests. And of course a return to blogging after my summer hiatus. But I hate the return of fall viruses.