If you ask 100 occupational therapists what they do you will get 100 different answers, because the nature of the profession is to help people do the things that are important to them. Every patient has their own priorities, and that makes all the stories different.
Instead of focusing on the 'what' I like to focus on the 'why.' When I need to be reminded 'why' I do what I do I like to drag this story out.
I knew a young family and they were unable to conceive. After spending many thousands of dollars
they made some arrangement with a young teenage mom so that they could
adopt her baby (just about to be born).
So they go to get the baby and sign all the papers and get on the plane. The baby was only a couple days old. On the way back home the baby goes into cardiac arrest
and the new mom (a trained health care professional) gives this
new baby rescue breathing and chest compressions. They are admitted directly
into the intensive care unit when they get off the plane.
It turns out that the baby had several STDs: syphilis, gonorrhea, chlamydia, plus other bad infections including CMV - any of which
could be deadly in a newborn. If that wasn't enough the baby had a poorly
developed liver and developed a condition called necrotizing enterocolitis -
they had to take out most of her small intestine as it had died inside her.
They also put in a feeding tube and a tracheostomy (the baby's lungs were
underdeveloped too and she couldn't breathe except with a ventilator). The baby also had a colostomy bag.
So the next eight months were a constant vigil in the ICU for these parents and their family. The feeding tube could never work properly so they had
to provide liquid nutrition directly into an artery - a process called
hyperalimentation. It is effective for the short term but ultimately will burn
out your liver, and that is what happened to the baby. She became so
jaundiced and sick that as a last ditch try they flew her to another city that had a great transplant program and prayed for a miracle. Unfortunately, the child's mesenteric artery which supplies the liver was also malformed and so
she was not a candidate for any transplant. They sent her back to the hometown hospital.
Now I imagine that everyday these parents faced a fork in the road and could choose
to either keep forging ahead or they could throw up their hands and give up. I
am not sure if anyone could blame them if they did that - after all, they did
not bargain for this situation: months in an ICU with a sick child that is not
biologically theirs, and running up hundreds of thousands of dollars in medical
bills (of course insurance companies at that time balked at coverage given the adoption and
that this was 'pre-existing'). But the parents never quit anyway. They kept with it,
every day, every night. Sleeping in chairs in the ICU. The baby had
some moments of real quality - she was not neurologically impaired and so with
regards to her cognition she was a normal 8 month old baby.
In the end, it was apparent that the baby was in pain, close to death, thrashing inconsolably, and jaundiced the color of yellow-green mustard. The parents made an unthinkable decision and chose to end her life by withdrawing the ventilator support. The baby was alert
and cognizant of her surroundings, which made the decision to withdraw support
so much more complex. I can't understand the depth of love it took to do this
for their child. Their child - not really theirs. But theirs nonetheless.
The baby died in her real mom's arms one night. After so many months in the ICU
and with every day an act of love I think that these parents deserved to be called the baby's "real" parents, regardless of the biology.
This is not a story about heroic doctors. It is not a story about caring nurses or diligent occupational therapists. Most of the real stories and the daily events that are out there are about the people we care for.
I provide occupational therapy because every parent has an unbelievable mission to help their own child, and when things go wrong OTs help them do things that matter to them. It is not so important 'what' you do because those stories will change with every patient and every family.
What matters is 'why' you do it. I do it because it is all about human need and the value of normal occupation like the dreams and hopes of a family, even in the face of impossible situations.
This is a story that I use for the purpose of focus.
Thursday, April 23, 2015
Thursday, April 16, 2015
An interesting quote was attributed today to Amy Lamb, the President-Elect of the American Occupational Therapy Association. Here is the quote as it appeared on Twitter:
I initially consider that the timing of such a statement that "No means not now" could possibly be related to the recent decision by the US Senate to refuse to support the Cardin-Vitter amendment that would repeal the Medicare outpatient therapy cap. Therapy leaders have been trying for many years to get the cap repealed and it was a stinging defeat.
I asked for additional context and clarity about the quote and was informed that it was generally stated as an important leadership principle.
The reason why this caught my attention is because of my own experience with the way that the occupational therapy profession deals with divergent opinions.
In 2013 I attempted to reach out to a former Ethics Commission Chair to discuss ongoing concerns with the Social Justice construct. That Chair was not interested in any conversation, and instead of receiving a note from that person I received a letter from an AOTA attorney that stated, "I understand your perspective on the Social Justice provision of the Ethics Code, and would note that it is settled business at this time." From the tone of that letter, the philosophy in play was clearly that 'No means no.' In fairness, that attorney also stated that there might be opportunities to discuss matters when the Code was re-written (in 2015), but that turned out to be a false promise because there was virtually no dialogue allowed with the Ethics Commission members during the current revision period. In fact, that lack of dialogue and unwillingness to engage the membership contributed to rather serious errors that have been pointed out regarding the Code that was just approved by the RA.
Another example was in conversation with another OT leader about a banal debate in 2014 regarding patient vs. client terminology. Specifically, I was stating that a lack of philosophic consistency is present in our terminology and ends up getting reflected in our meandering and inconsistent focus on our definition of practice. In that conversation I was told that "I would describe the “name” issue as essentially resolved in OT and a non-issue." Again, since the conversation was not of interest to the leader, it was clear that 'No means no.'
These two examples demonstrate clearly that divergent opinions are not always welcome and that sometimes there is a disinterest in even hearing other people's opinions. When people tell you that something is 'settled' or 'already decided' that is a rhetorical method that cuts off conversation.
In a rather stunning juxtaposition of the 'No means no' methodology there has been evidence of conduct that indicates that 'No means no' only when it is expedient to the beliefs of those in charge. Specifically, the OTA Ad Hoc Entry Level group conducted a study that clearly demonstrated the membership's disinterest in moving the OTAs to a bachelor-level degree, but then still advanced a motion to explore how to be successful if a change is ever desired. There have been several statements by leaders about the entry level OTD issue that show a similar lack of interest in member input - 'The decision has already been made' and 'The entry level OTD is happening like it or not.' These kinds of statements clearly show that 'No means no' only when applied in certain directions.
So the public statement that acknowledges the value of persevering is something new and I am hopeful that this philosophy will be applied evenly, particularly when members speak out about important matters. This becomes important because of the new Code of Ethics that states that 'negative online comments' may constitute an ethics breach if someone believes that those comments serve to stifle conversation. Obviously, persevering and lobbying a position to one person could be considered 'badgering' by someone who holds an opposing view. This is a very dangerous provision in the new Code of Ethics that could be used to limit the participation of members. Someone could simply state that another person's opinions are 'badgering' and 'limiting the speech of others.' Such a provision is a serious threat to free speech.
This is why it was so interesting to see the statement about persevering in leadership. I am very hopeful that this statement will be universally applied and that this might signal a new day for the way that occupational therapists deal with conflicting professional opinions on the important matters of the profession.
If 'no' actually means 'not now,' and if persevering is a value, then people should be encouraged to persevere in their opinions and lobbying whether or not anything has been 'settled.' That is the ultimate value of free speech.
Friday, April 03, 2015
In the Open Journal of Occupational Therapy this month there is an opinion paper written by Barbara Hemphill entitled Social Justice as a Moral Imperative. The position presented is that Social Justice belongs in the AOTA Code of Ethics, that it is embedded in the tradition of the OT profession, and that it is not a political matter.
There continues to be confusion and conflation between the concepts of Christian charity and Social Justice. The author states that Social Justice is not political, but this is refuted by literature review. The originators of this movement in the OT profession have overtly stated that social justice is political (Wilcock, 1998; Townsend, 1993). This is an inarguable fact.
I have already written rather extensively on the topic of whether or not Social Justice was a Core Value of the occupational therapy profession. I don't have too much to add to that original essay and would point to it as my response to the author's assertions on this topic.
One additional point that requires rebuttal is the statement about the parable of the Good Samaritan. The author states that this parable is an example of Social Justice. Here we are able to understand the author's characterization, because the statement is attributed to Jim Wallis, who is a very controversial and left wing Christian activist. Reverend Wallis is editor of Sojourner's magazine, which has received millions of dollars in funding from George Soros' Open Society Institute. Reverend Wallis regularly espouses an extremely politically liberal viewpoint. Referencing a politically partisan individual undermines the author's assertion that Social Justice is apolitical.
The specific reference that is used about the Good Samaritan is Jim Wallis' recently published book, "On God's Side: What religion forgets and politics hasn't learned about serving the common good." With this kind of reference it is difficult to claim that the definition of social justice has nothing to do with politics.
Aside from that, the author seems to misunderstand both the parable and the implications of social justice. Social justice requires resource (re)distribution in order to assure equity of outcomes. However, the Good Samaritan did good deeds by his own charity. When the man was robbed, the Good Samaritan used his own resources based on his own choices. He did not run to catch up to the priest or Levite that had already passed the man on the road. He did not make them hand over their wealth to give to the man who was robbed! If he did, THAT would have been an expression of social justice.
Instead, he took care of the man himself. That is Christian charity.
Social Justice is political and does not belong in the OT Code of Ethics. It is important to carefully look at the references used by those who are making claims that it is not political.
embedded links above, and
Hemphill, B. (2015). Social Justice as a moral imperative, The Open Journal of Occupational Therapy, 3(2). Available at http://dx.doi.org/10.15453/2168-6408.1150
Townsend, E. (1993). 1993 Muriel Driver Lecture: Occupational therapy's social vision. Canadian Journal of Occupational Therapy, 60, 174-184.
Wallis, J. (2013). On God's Side: What religion forgets and politics hasn't learned about serving the common good. Grand Rapid, MI: Brazos Press.
Wilcock, A.A. (1998). An occupational perspective of health. Thorofare, NJ: Slack, Inc.