Human Challenges and Autonomy

There was a commonality in two seemingly disparate articles in this week’s Journal of the American Medical Association (JAMA).   One article was about falls as “never events” in the elderly and one was a moving personal reflection by a physician about her mother’s illness.  For me, both spoke to the human need for autonomy and the also human need to be challenged to do better at any age.

Dr. Maria Maldonado, in her article entitled, “Warning Shot”, gives a first person account of her mother being told that her brain cancer has returned.  She talks about her mother having reached a stage of acceptance of her disease and prognosis that she, as the daughter, had not. Dr. Maldonado relates all this in the context of going, the next day, to teach medical interns about “breaking bad news” to patients and their families.  She finds herself thinking about how well her mother’s oncologist had done it.  “Bravo Doctor.  You knocked it out of the ballpark.  You took care of my mother.  You took care of me.”  She closes the article with her mother worried more about her daughter and her daughter’s sadness rather than her own impeding decline and ultimate death. 

“My mother asks me, “How do you feel?”  Shoring us up.  Worrying over us.  Loving us.  “Sad,” I say.  She looks out the car window.  I can tell she’s sad too in part because of that timeless way that mothers feel pain over their children’s unhappiness. “

Dr. Maldonado captures a woman who is in charge of herself and is focused on her children rather than on herself.  Her mother exudes independence and autonomy in her concerns.  She, the dying mother, is the one caring for her physician daughter.  Dr. Maldonado’s mother does not need her daughter to make her decisions or to treat her as a child.  Her mother is still the mother caring for her child. 

That image stayed with me as I turned to the article entitled, “Measure, Promote, and Reward Mobility to Prevent Falls in Older Patients” by Drs. Samir Sinha and Allan Detsky.  In the article they point out that in our zeal to try and prevent falls in the elderly when they are inpatients, we may actually be making their health worse!  The current National Quality Forum lists of “never events” which are defined as events which should never happen include patient falls.  However protocols that are focused on preventing falls can tend to keep people in bed far too much leading to poor recovery from surgery, muscle atrophy, decubitus ulcers, and pulmonary embolus.  The federal government through CMS is implementing policies that will deny hospitals payment for such “never events” thus potentially encouraging decreased patient mobility even more.    

The authors of this article openly fear that this emphasis on fall prevention with non-payment of hospitals for falls will lead to what they call an “epidemic of immobility” as an unintended and harmful consequence.  There is no question that if you stress mobility and advance programs of early and active mobility, you increase the risk of falls.  There is also no question that health professionals will tell you that often people who are sick and compromised just want to stay in bed and have to be pushed and motivated to move.  But people need a little friendly push every now and then, even if they are elderly and infirm.  People need to be given a responsibility for their own well-being.  That also improves their psychological state and their belief in their own abilities.  As is true for just about everything in medicine, the risks and the benefits always must be balanced but focusing only on fall prevention, ignores the great risk of immobility and dependency. 

Potentially, hospitals can avoid falls by limiting mobility through physical or pharmaceutical restraint.   That is antithetical to independence and autonomy.  Thus the risk of avoiding a fall should be considered as well as the risk of falling.  That should include the risks of harm from those restraints and those medications.  The risk of avoiding the fall should include the risk of robbing someone of their autonomy and their potential for independence even if that independence will never be complete. 

Autonomy and independence often require pushing oneself and pushing those you care about and care for.  For people at risk of falling, that means doing all you can to get them mobile in as safe a fashion as possible.  For Dr. Maldonado’s mother, it meant pushing her daughter, the physician and the expert is communicating “bad” news to patients to accept the brain cancer diagnosis. 

At an early part of my career, I sat on a committee that was involved in preparing a report to Congress as part of the development of the Americans with Disabilities Act that was passed in 1990 (obviously I did this as a mere child).  Our charge was to try and comment on aspects of the draft legislation that had to do with insurability and benefits coverage.  On that committee were also representatives of patient advocacy groups including one gentleman who was a double amputee.  He spoke forcefully about his independence and the fact that he was healthy, he just had no legs.  It angered him that he had to get his wheelchair through a doctor and through his health coverage as that labeled him as sick.  His argument was the wheelchair should come through the Department of Transportation because that is what it was to him: transportation.  He wanted to be seen as an individual and not as a double amputee who needed help.  

We all have something to give at every stage of our lives but in order to give we have to be independent.  We have to have our own dignity.  Health care and health care decision making has to foster that independence and that personal responsibility so that a mother can remain a mother even when her daughter is a trained adult physician and so a person can try to walk even if they are in danger of falling. 

A Great Man

I see greatness every day.  That may seem strange but greatness to me is obvious in our lives and our society.  I am really fortunate because I get to see greatness in my work. The people our Health Assistants help are people who struggle to make ends meet, who live paycheck to paycheck, who work hard, and who do so in the face of illness, sick children, difficult work situations, and sometimes well-intentioned but misguided rules and regulations which just make things harder for them.  In response they still take care of their families, live their lives, and get up every morning to go to work.  That is greatness.  I see our Health Assistants really fighting for those people, crying with them, and encouraging them on a daily basis.  Those Health Assistants show greatness.  It is simple to see and it is all around us.    

This week I said goodbye to a man who personified greatness.  My wife and I have been friends with Dr. Wendy Bell and her family since Wendy and Rhonda were interns together.  They became “sisters from different mothers” as Wendy likes to say and through Wendy, I got to know her father, Mr. Clarence Crutchfield.  I had the honor of being at his funeral yesterday.   Mr. Crutchfield grew up in the segregated South at a time when it was hard for a young Black man to get ahead.  He joined the segregated Navy to serve his country in the midst of World War II and served on a ship in the Pacific as a signalman.  He then went to Tennessee State University, became a high school physical education teacher and coach, and married.  When his oldest child, Wendy, was five, he moved north to Detroit so his children could have better education opportunities and there he raised three daughters who became accomplished in their own professions.  At one point, he received his Masters in Counseling and went on to be a guidance counselor in the Detroit Public School system for 37 years.  He was a no nonsense guy who exuded dignity, respect and self-reliance and who believed in the importance of education and family above all else.  He stayed strong as the head of the family even after he retired and moved to Atlanta to be close to his daughters and his grandchildren.  Every year, when Rhonda and I would go to Wendy’s house for Christmas dinner, he was always at the head of the table, leading the opening prayer, and being the rock, the foundation, of a family that was anchored in faith and love.  That is greatness.  He took care of business.  He took care of his family.  He was strong in the face of adversity.  He was a man who would not be obsequious to anyone and for whom complaining was never an option.  That is greatness.  I truly loved that man and admired him tremendously.  He was a man who really would judge someone on the content of their character and not the color of their skin.  When he was at his granddaughter’s wedding and she was marrying Eric who is extremely fair skinned with red hair, he was thrilled and said to me, and to anyone else who was listening, that the world had really changed.  There was no one happier than he was.  He never stayed in old paradigms and rather recognized that the world does change and sometimes even for the better.  That is greatness.    

When I think of him, I think of the old parable that is sometimes called “The Rabbi’s Gift” and sometimes called “The Messiah Among Us”.  I tried to find the source of the story and could not.  I first found it referenced in a book entitled “Deep Down Things: Selected Writings by Richard McCullen CM written in 1995.  Father McCullen was the Superior General of the Congregation of the Mission which is the organization of priests and brothers who follow St. Vincent and are often called the Vincentians.  I first read the story in “The Art of Possibility” by Benjamin Zander but it was M. Scott Peck in his book, “The Different Drum”, who is usually given the credit for popularizing the story. 

A monastery had fallen upon hard times. Once a great order, there were only five monks left in the decaying house: the abbot and four others, all over seventy in age. Clearly it was a dying order.

In the deep woods surrounding the monastery there was a little hut that a rabbi from a nearby town occasionally used as a retreat. On one occasion when the rabbi was in his hut, the abbot decided to go and speak with him and ask the rabbi if by some possible chance he could offer any advice that might save the monastery.

The rabbi welcomed the abbot at his hut. But when the abbot explained the purpose of his visit, the rabbi could only commiserate with him. “I know how it is,” he exclaimed. “The spirit has gone out of the people. It is the same in my town. Almost no one comes to the synagogue anymore.” So the old abbot and the old rabbi wept together. Then they read psalms together and quietly spoke of deep things. The time came when the abbot had to leave. They embraced each other. “It has been a wonderful thing that we should meet after all these years, “the abbot said, “but I have still failed in my purpose for coming here. Is there nothing you can tell me, no piece of advice you can give me that would help me save my dying order?”

“No, I am sorry,” the rabbi responded. “I have no advice to give. The only thing I can tell you is that the Messiah is one of you.”

When the abbot returned to the monastery his fellow monks gathered around him to ask, “Well what did the rabbi say?” “He couldn’t help,” the abbot answered. “We just wept and read psalms together. The only thing he did say, just as I was leaving –it was something cryptic– was that the Messiah is one of us. I don’t know what he meant.”

In the days and weeks and months that followed, the old monks pondered this and wondered whether there was any possible significance to the rabbi’s words. The Messiah is one of us? Could he possibly have meant one of us monks here at the monastery? If that’s the case, which one? Do you suppose he meant the abbot? Yes, if he meant anyone, he probably meant Father Abbot. He has been our leader for more than a generation. On the other hand, he might have meant Brother Thomas. Certainly Brother Thomas is a holy man. Everyone knows that Thomas is a man of light. Certainly he could not have meant Brother Elred! Elred gets crotchety at times. But come to think of it, even though he is a thorn in people’s sides, when you look back on it, Elred is virtually always right. Often very right. But surely not Brother Phillip. Phillip is so passive, a real nobody. But then, almost mysteriously, he has a gift for somehow always being there when you need him. He just magically appears by your side. Maybe Phillip is the Messiah. Of course the rabbi didn’t mean me. He couldn’t possibly have meant me. I’m just an ordinary person. Yet supposing he did? Suppose I am the Messiah? O God, not me!

As they contemplated in this manner, the old monks began to treat each other with extraordinary respect on the off chance that one among them might be the Messiah. And on the off-off chance that each monk himself might be the Messiah, they began to treat themselves with extraordinary respect.

Because the forest in which it was situated was beautiful, it so happened that people still occasionally came to visit the monastery to picnic on its tiny lawn, to wander along some of its paths, even now and then to go into the dilapidated chapel to meditate. As they did so, without even being conscious of it, they sensed the aura of extraordinary respect that now began to surround the five old monks and seemed to radiate out from them and permeate the atmosphere of the place. There was something strangely attractive, even compelling, about it. Hardly knowing why, they began to come back to the monastery more frequently to picnic, to play, to pray. They began to bring their friends to show them this special place. And their friends brought their friends.

Then it happened that some of the younger men who came to visit the monastery started to talk more and more with the old monks. After a while one asked if he could join them. Then another. And another. So within a few years the monastery had once again become a thriving order and, thanks to the rabbi’s gift, a vibrant center of light and spirituality in the realm.

Greatness is a gift given by those who radiate goodness and caring.  Greatness is all around us in the people we may least suspect.  Clarence Crutchfield was a model of greatness.  Greatness is in those who take care of their families, live their lives, and create light and hope for their children and for their community.  As our Health Assistants at Accolade help their clients, I know that they benefit from coming in contact with the greatness in those they speak with on a daily basis.  The challenge is recognizing the greatness in those people in the course of our work routines.  My hope for this season is that as Health Assistants we see, admire, and acknowledge the heroes we help.

When Tragedy Strikes Children

I sent this out to my team at Accolade following the horror at Newtown CT:

This past week, we all witnessed the horror of small children attacked and killed while they were in the safest place imaginable – their school.  We, in the business of caring, watched this with the rest of the world as it played out on our computer news feeds and on our television sets.  There is no way to make sense of this and I will not try.  I will, however share my thoughts on how we help the living following this crime.  How we focus on being the support that they may need through these horrific times. 

For all of us, the thoughts of our own children and our own families naturally come to mind.  I have three grandchildren in Connecticut and I could not help but think about how vulnerable they are.  My wife immediately took out a map to see how close Stamford, where they live, is to Newtown, the site of this atrocity.  We all needed to find ways to reassure ourselves about those we love, at the same time feeling a little guilty at our own relief as we thought of the parents and grandparents who would find no such reassurance as they learned that their own precious gifts were gone in the worst possible way. 

Here at Accolade, while we may seem far removed from this tragedy, we may be helping those in the media whose job it is to cover this story with sensitivity and care while trying to deal with the personal feelings and emotions the tragedy can invariably elicit in them.  We may have people we help who have lost children for which this episode brings memories that are too painful to bear.  We, ourselves may have our own histories and tragedies that this brings too clearly into focus.  Through all of our own personal prisms, we have to help. 

The first thing to realize as we try to help those who are affected is that there really is nothing we can do that is concrete to take away the horror.  We cannot go back in time and try to treat the lost soul who carried out this abomination.  We cannot go back and increase the security at that school to prevent his ability to get into the building.  We cannot position an alert police officer there who intervenes to save the day just before the tragedy as would probably happen in a television program.  We can, however, do what we do best.  We can listen.  We can empathize.  We can provide resources such as mental health professionals to help people though the immediate agony and the aftermath.  We can be there for those in need, sometimes just by quietly being with them, saying little but letting our presence be a small comfort for them. 

Rabbi Shaul Praver who was the Rabbi of the youngest victim, Noah Pozner, may have put it best when he was asked to give an explanation for such a horrific act.  He said, "I don't know the answer to that.  I never try to present a theological answer to that.  I think what's more important is to have compassion, humanity and hold someone's hand and hug them and cry with them."  

That is our role here at Accolade.  We are fortunate to have tremendous expertise in our own Accolade family as we try our best to help people deal with the aftermath.  Turn to the experts.  Ask for help.  Don't try to work through the pain alone.  We have to have compassion, humanity and to hold someone's hand, even over the telephone, and make our verbal hugs felt.  That will not be easy.  That effort will call upon us to feel emotions that are not pleasant or positive.  But that is what we must do for those affected.  It is what we do and there is no more important time to do it than in moments such as this.  

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