Connecting the Dots

I changed jobs almost a year ago; after 19 years of working as an occupational therapist in a large school district, I moved over to the world of academia, joining the faculty at a university in the heart of the city in which I live.

I continue to provide OT services for patients, but now part of my job also includes helping to shape the education – and the perspectives – of future occupational therapists.  I weave into what I teach many of the things I learned as a result of what my dad, my family, and I experienced after his diagnosis of brain cancer.  I feel compelled to impress certain things on the group of fledgling healthcare professionals before they enter the clinical arena, in hope of maximizing the positive impact they will have on their future patients and the families of their patients.  In the medical world, these tips are sometimes referred to as “clinical pearls.” 

I think there are a lot of lessons for the OT students to carry forward into their interactions with patients from things I saw (or didn’t see) when I was with my dad while he was in rehab.  On one such occasion, the occupational therapist came to my dad’s room and escorted us to the rehab gym, where she set him up at a big table.  She brought over a bowl of many small items which she dumped onto the surface in front of him, and she instructed him to use his left hand to sort the items into piles according to their similarities.  Before Dad could get started, she turned around and walked over to another patient on the other side of the gym, presumably to check in on that patient while Dad got going on the assignment he had gotten from her.

It was odd for me to be there in that setting as a caregiver instead of a service provider; I tried to make a conscious effort to let the therapist take the lead and not to prompt my dad too much during the intervention.  I watched him as he sat in the wheelchair that the OT had positioned at the table.  He looked at the stuff on the table for a minute, glanced around the room for a couple of minutes, and then looked at me.  “I guess she wants me to clean out her junk drawer,” he said to me in a stage whisper.  “If it was up to me, I would just throw all that crap away, but I guess if I do help her she will do something to help me get better so I can go home.”

Of course, I knew that what she wanted him to do was for his benefit, not to help her organize her junk drawer, but what I also knew was that Dad hated junk and that he hated to do things that he saw as a waste of time.  The OT had not explained to him why he was supported to perform the task.  I tried to explain it to him, but he was way past the point of listening at that point; he just wanted to get done with what he saw as the worthless job she had given him so he could get the hell out of there.

After about five minutes, the OT turned around and saw that Dad hadn’t started on the activity.  She came back over to us, and I waited to see what would be communicated between the two of them.  “Bill,” she said, annoying me with her assumed familiarity, “What did I tell you to do?”  And then I was annoyed with her tone and her attitude.  Dad, in maybe the first time in my life that I’d ever seen him do such a thing, offered an excuse to get out of doing the work: “I have to go to the bathroom, and I have a headache,” he told her. 

She seemed all-too-eager to take the bait.  “Oh, no problem,” she told him.  “We can go back to your room so you can use the restroom in there and then you can take a break.”

“Take a break from what – sitting on the sidelines with a task he sees as a complete waste of time while you chat it up with another patient??” I wanted to yell at her.  I knew what Dad was doing, but I also knew from past experience since he’d been sick that if I started raising a stink it would either embarrass him or scare him or both. 

I tell this story to the OT students now because I want them to see the big picture in the interventions they provide for their patients.  “Always connect the dots for the patient and for their caregivers,” I tell them.  “Don’t leave them to wonder why you are asking them to do something.  Talk to them about what their priorities are; explain the purpose of the activity and clearly identify what the patient will gain by putting forth effort in the session. Find out what their carrot is - what motivates and interests them - and incorporate that into your treatment plan.” 

There are several more clinical pearls that can be taken from this story, too, lessons that I think are important for healthcare professionals to know.  Through telling stories about people with injuries or illness like my dad, I hope to cultivate the compassion these students have so that they are able to connect the dots to effectively serve the needs of their patients for many years to come.

A Call for Awareness: A New Goal

As I have shared before on this blog, I am very passionate about my work as an occupational therapist, and for many years I have considered myself an advocate for individuals with disabilities.  However, it wasn’t until I became a caregiver of a person with a catastrophic illness that I really “got it.”  It’s a club no one really wants to join, but at some point many of us will, and, through my experience in helping to take care of my dad as he went through treatment for the brain cancer that took his life a short time later, I learned things as a health care provider, as a daughter, and as a person that I likely wouldn’t have otherwise.  

In today’s health care system, the bottom line is so often seen as the dollar: what's stressed is funding and reimbursement instead of quality patient care.  As a medical professional, I know that it’s easy to get caught up in productivity quotas, documentation, and administrative spreadsheets and paperwork.  But very few of those of us, if any, got into this field for those reasons; by and large, we became health care providers to try to help people.  Somewhere along the way, though, in many cases, our priorities are shifted.  Our focus is changed: we go from looking towards the horizon to staring at the road just in front of us as we work to get through the day-to-day procedures of our jobs.

Like a lot of times when dramatic realizations occur, something happened in my life that caused me to rethink my focus, to shift my priorities, to change my perspective.  Through telling the story of the health care that was provided to my dad during his ten-week long battle with brain cancer, I want to challenge the way other health care providers think about their patients, in hopes that that shift in perspective will help them to provide better care to their patients, especially those who are facing life-altering illness or injury.  I have decided to set a goal of writing a book, one that will come from parts of the story as it has already been told through this blog and from added accounts of what happened during the time of my dad's illness.  My goal is to tell the story piece by piece on this blog so that it can be shared in book format with people who are involved in the treatment and care of individuals with life-changing illness or injury.  

Through this project, I want to bring awareness to other health care providers and rehab professionals about the importance of recognizing that every patient has a story.  I hope to encourage those in the medical field to remember to look towards the horizon as they care for each patient, to think outside of the box, to see things through the patient's eyes, to understand that what they think is important for a patient's recovery may not be the same as the priorities of the patient, and to realize that supporting a patient's family is part of every intervention.  I want to urge rehab professional and others in the health care field to do their part to assist families in accessing services for both themselves and for the patient so that adequate support will be available even after discharge.  I want to remind health care providers that they are in a position to share their expertise in ways that have meaning to the patient, regardless of changes in function or of life expectancy.  I want to emphasize the fact that compassion is a part of every good treatment plan.  I want to tell this story with a goal of inciting a shift in perspective by underscoring the importance of patient-centered intervention and care of the patient as a whole, not just in medical professionals but in everyone who may one day be involved in the care of someone with a life-changing illness or injury.

Stay tuned ...

Brave and Important

I mentioned in the last entry that one of the things I've been doing to help me through my own grief is reading books and blogs of others who are also struggling with the difficult work of grief.

Here's a link to a blog that I started reading about the time my nephew was born last spring; in fact, I got the idea for making the video of photos from my sister's pregnancy and from the birth of my nephew from this site.  The story of the family that's detailed in the blog is sad but so touching and inspiring:

                                 Chasing Rainbows

I started reading the "Darcy Claire" part first - but it will make more sense if you click on each of the children's names across the top of the home page in order from left to right (that's their birth order), Gavin then Brian then Darcy Claire. When you get to the Darcy Claire part, have some tissues ready and be sure to watch the video (the link is at the bottom of the entry when you click on her name).

When you've read that, find the Blog Archive list on the right-hand side and click on "2013" and then "April" - that's what was happening in real-time just after I started following the blog, and it's very dramatic.  Start reading at the entry from April 2013 entitled "A Piece of Pop" and follow it from there - you won't believe what happens as the story continues to unfold.  

Be sure to read the entry called "Without Ever Uttering A Word;" it's touching beyond description.  It makes me think of the many kids I've gotten to know through my job as an occupational therapist who aren't able to communicate verbally and who've made such an impression on me through the years.  And be sure to read the one entitled "The End;" it's potentially the most powerful blog entry I've ever read.

Some of the things that have struck me in particular as I've read the entries (and from watching the Darcy video) are how touching it is how Kate (the mom) never seems to mind having her picture taken, even in the midst of tragedy, how she repeatedly says she feels "privileged" even in the midst of what must have felt like excruciatingly hard waiting, and how she seems to need to do something to try to help herself through her grief, even as the tragedy unfolds. Some of the stuff she writes about how hard it is to function at all in a state of grief reminds me of how I felt like I was that first year after my dad went on ahead, struggling just to get supper on the table or to pay a bill or help my kids with homework.  I admire Kate's writing because, while she's hopeful and that fact shines through almost everything she writes, she doesn't sugarcoat some of the ugly of grief, and I think that's brave and important.