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 Changed Form

It’s difficult to know what to do or say or even think on a day like today; how does one mark a milestone that they wish didn’t have to be?

Today marks three years since my dad went on ahead.  Three years – that seems so unbelievable.  There has been so much pain, and mourning, and missing him in that time.  There has been a lot of change, too, some for the better and some, well, probably not so much. 

Here's what I am working on at this point: living - and thinking - so as not to allow cancer or sadness or grief to rob me or my family of anything more.  Because what I have learned in this past year is that it's so important to see the good in the moments, even when the grief makes things look blurry. What I have been working on since I sat in this same place a year ago is finding ways to make sure I don't miss the good, the happy, the important moments, even as much as I miss my dad.

It would be so easy to fall into the habit of viewing things as a misfortune, an unfairness, or even a disaster; one thing I've learned for sure since my dad died is that getting a foothold on perspective doesn't always come naturally - it often takes work and effort.  For me, at this point, there are times when the grief is still really thick, but I can tell that it has changed form. I think so often that Dad would be shocked and probably even more disappointed than touched that there are those of us who are still so much in mourning; I know he would want those of us he loved and cared for to be happy. That thought pushes me to try to do better, to be better, to do my best, just as my dad pushed me to do so when he was physically on this earth.

And so, through effort and dedication, I continue to be transformed as time marches on, and so does my grief. Instead of leading me as it has, the grief mostly seems to accompany me these days, still present but in a changed form.  I find myself sometimes having to reach to feel him around me lately, which brings about a new type of fear and a new form of heartbreak.  I am able to say that I am happy and grateful in the midst of it all, though, even though when the tears and anger come as they still sometimes do, I miss Life for him - and I miss him more than I ever thought possible.

Lessons

Life, for the most part, is full of the mundane, the predictable, the obvious, the day-in/day-out routine.  We get up each morning, get dressed, eat breakfast, go to work or school, run errands, take care of the kids, make dinner, clean up, and go to bed.  Repeat.  It is easy to become complacent, to take it for granted, and even to sometimes complain about the little things without realizing what a blessing things around us really are.

And then, in the blink of an eye, everything changes.  We are jolted out of our reverie, forced to refocus and to reevaluate pretty much everything.  And even as much as we might wish that things would go back to the way they were, things are changed.  We are changed.  And, for better or for worse, so is our perspective.

In a way, the holiday season was part of the repeating loop for me over the years.  Certainly the joy and the excitement were there, especially seeing the wonder and the happiness in the faces of the children in the family.  Looking back from this vantage point, though, I can see that I spent too much time worrying leading up to and during the holiday season each year.  I worried about when and how the Christmas decorations got put up, I worried about having the “perfect” gift for everyone on my list, I worried about what I would prepare for holiday get-togethers, I worried about getting a photo for the annual Christmas card and getting the cards addressed and mailed out in a timely manner, and I worried about making sure that my kids had an action-packed, memorable (at least what I thought was memorable at the time) holiday season.  A lot of the stress I felt during the season was admittedly self-inflicted.  And, as I see it now, a lot of it was unnecessary and unproductive. 

 As I got out the Christmas decorations this year, I thought about years past when I did the same thing and I thought about when my dad was sick.  The hustle and bustle was still present that year - it was just focused on a different set of priorities.  My kids did most of the decorating at my house that year; I was out of town helping to care for my dad a good bit during that the time.  I did 100% of my Christmas shopping online, much of it late at night in between conversations with Dad.  Some of the gifts did not get wrapped, and a few even got left behind in the transport between my house and my parents’ house, where my extended family gathered on Christmas Eve and Christmas Day, taking shifts being with Dad who was in the hospital in the ICU at that point. 

I will never forget how awful it was being in the hospital that Christmas.  The hospital cafeteria closed after lunch on Christmas Eve, and families of patients in the hospital had to fend for themselves for food for the next day and a half after that.  The roads were icy and travel was precarious, and everyone in my family was so, so sleep deprived and concerned about Dad and about each other.  None of us cared about opening gifts or celebrating; the only thing we really wanted to do was to spend time together and to do whatever we could to try to help Dad.

I thought about that a lot as I lifted each string of lights and each ornament out of the boxes again this year, and here’s what I realized:  As tough as things were that Christmas, not for one second did any of us lose sight of the value of being there together.  No one in the family ever said anything like this isn't fair or I'd rather be somewhere else or doing something else.  Together we struggled through my dad’s illness and death and together we have struggled through the grief since then, the day-to-day routines as well as the holidays that have come since then now colored in a very different way.  The lessons I learned from all that we went through that holiday season are things that I am certain will never leave me – things like how it’s more important to focus on the joy and togetherness of today than to worry about the details of tomorrow, especially when much of tomorrow is out of our control.  Like how it’s important to ask for help when help is needed and how stuff is just stuff.  Like how when one of us is sad or exhausted or discouraged or sick or hurt, we are strong as a whole.  And like how, even in the midst of the everyday, it's possible for perspective to reflect the riches that we are fortunate enough to hold in the moment.

Well Worth the Effort

Many mornings when I get up before the sun rises to see my daughter off to high school it reminds me of how I used to drag myself out of bed in the early morning on school days when I was her age.  I got up then, though, not because my school started really early like hers does, but because I had to get in a run before school when I was in the midst of a training season for track or cross-country. 

Early morning running with my dad

I’ve never been a morning person.  On most days, I get up because I have to, not because I want to at that particular time, and, truth be told, I hated getting up for those early morning runs.  It was always dark, and the temperature always seemed to be cooler than I preferred, even in the late spring or early fall months.  I was always a little stiff and often so tired at that time of day that I could hardly keep my eyes open as I ran down the street, guided by the streetlights, counting freshly thrown rolled-up newspapers in the driveways to pass the time as I went along.  Many afternoons or evenings when I ran, often for the second time in the same day, I did it because I loved it, but, on those mornings, I did it because my dad expected me to put in the extra effort.  It was part of the plan he had written out for me each week, the training program that he said would pay off at the next race, which, for me, was always just around the corner.  I loved the racing part, too, but not those morning runs – those I just struggled through.

I remember on so many occasions looking up as I crossed the finish line at the end of a race so that I could see the look on my dad’s face.  I judged my performance in each event by the look I saw in my dad’s eyes at the end of the race; in an instant, I could tell what he was thinking – and many times it was this: it was well worth the effort. 

I knew it then, and I know it even more now: there is such privilege that comes with knowing someone well enough to know what he or she is thinking, a secret code of which it is an honor to have an understanding.  I often think back to the few episodes of perhaps oddly placed confidence that I had when I was helping my dad during the weeks of his illness. One instance in particular occurred on the day my dad went from the hospital to a rehab facility across town. The hospital staff wanted to have him transported by ambulance, but I felt it was essential to his mental state not to have to ride in another ambulance at that juncture in his recovery. Somehow, from out of necessity I guess, I found the confidence to tell the nurses that I was certain I could safely help him get from a wheelchair to the car at the hospital and then from the car to the wheelchair and inside the rehab facility.  "I have no doubt I can keep him safe," I remember saying to a couple of nurses in the hallway outside his hospital room.  I felt like they were looking at me doubtfully, but they said ok and that was that.  I am trained in assisting with patient transfers like that, but I work with children, not adults.  I felt sure though; I knew I would do anything to help my dad, and I was confident that together our effort would pay off.

Doing whatever it takes, with both of us wearing the same expression of determination

There were a few more things that happened like that while he was sick, with my certainty coming from almost out of the blue, each time tied to the fact that I was completely determined to do whatever it took to help take care of my dad.  The most striking bout of unexplainable conviction that I experienced during his illness, though, was when he asked me how we would know what he wanted if he lost the ability to talk.

“I’ll just know,” I told him, somehow without missing a beat after he threw that question out into the room.  I cannot explain the sense of sureness I felt in the moment; looking back, I realize that it would have been much more reasonable for me to feel a sense of terror and uncertainty in the moment.  We were in the den of my parents’ house, the day after we’d brought him home from the hospital for the last time.  It was New Year’s Day, and my dad had not rebounded the way I’d thought he would once he was on his home turf.  He was still trying to eat to get his strength back, and he had been asking for small servings of food since he’d woken up that morning: “maybe a piece of bacon,” “some fruity dessert,” (which is what he called the cut-up pieces of fruit in a plastic bowl purchased from the produce section at the grocery store), and, the request always accompanied by a gesture of the quiet snapping of his fingers, “just a little piece of chocolate.” He’d asked for and had eaten a little of each, along with a sip of his favorite beer, Foster’s, which he drank through a straw while he sat up against the cranked-up mattress of the hospital bed in the middle of the den.  His voice was hoarse and breathy, and it seemed to be getting weaker as time went on despite the efforts of my dad to eat and take medicine that was supposed to make him feel better.

His concern about losing his ability to talk was legitimate, and I honestly don’t know the source of the confidence I heard in my own voice when I answered his question that day in the second-to-last verbal exchange I ever had with him.  I guess I would have to say it was an accolade of sorts for the extra time the rest of my family and I had been lucky enough to have with him over the weeks of his illness as we battled along with him.  I knew that if necessary, I would look at my dad and just know what he was thinking, just like those times many years ago when I crossed the finish line of a race. And again, it was well worth the effort.

Room for Improvement

There are several things that have stuck with me from during the time that my dad was sick, things that I perceive as mistakes and missteps that were made in the care and treatment of my dad by others during his illness.

One of the main ones comes from what was done - or rather, what wasn't done - by his oncologist in the last couple of weeks of my dad's life.  

I sometimes read a blog called People I Want To Punch in the Throat.  It's usually entertaining and sometimes even thought-provoking.  Every time I look at the title of it, though, I am tempted to make up a list of my own of people whom I wouldn't mind punching.  Towards the top of that list would go the name of my dad's former oncologist.  

I recently read an article about the subject of doctors who desert patients who are in the end-stages of their disease.  This article made me think again about my dad's oncologist, whom, as I've said in the past, we really liked in the beginning.  So much so that our fondness for and our trust in him, along with the urgency of procuring treatment for the cancer which we understood from Day One to be very aggressive and the logistical challenges in getting Dad in to see other doctors, resulted in our not consulting with other oncologists in the area.  It was a one-and-done scenario.  Our second opinion came from the nationally recognized team of neuro-oncologists at Duke which stemmed from a referral from Dad's hometown oncologist.  Since my dad's death, I've wondered so many times whether I should have done something else to make it possible for other oncologists in the city where my parents lived to give their opinion on my dad's case - but that's fodder for discussion for another time.

We thought we were right in choosing the guy we chose to provide medical care for my dad.  What's really messed up is that, even in a critical situation like my dad's that should have been recognized and treated as such every step of the way, the inconsistent availability of even the nurse in the practice when we had questions or concerns, the slow call-backs, the wait-your-turn kind of attitude that was so clearly conveyed to us throughout the first eight weeks of Dad's illness was something we felt we just had to take.  Never did I question the service or the care being provided by anyone at the oncology group, even when I realized that they could have done some things better - more efficiently, more compassionately, and with more effort to help my dad.  I just took whatever they were giving out - even though it definitely affected my dad's quality of life.  My family and I were struggling more than I can even begin to explain with caring for my dad and dealing with the series of blows we were being dealt, and I guess I didn't have it in me to buck the system.  Still, though, from this vantage point, neither the way my dad was treated nor my reaction to the quality of the service provided to my dad sits right with me.  

Things were going ok as far as I could tell with our interactions with the oncologist, though, until a few days into my dad's second hospitalization.  As much of a warrior as I can be sometimes when people I love need my help, for some reason I didn't see how wrong it was for Dad's doctor to take several days off work for Christmas and then again a week later, as my dad was entering hospice, for New Year's.  I get that the man wanted to spend some quality time over the holidays with his family - but DAMMIT didn't he see that my family wanted some quality time too?  I have thought long and hard about it, but I still cannot understand how the guy just punched out for 85 hours (yep, I counted) TWICE less than a week apart, not even CALLING to check in on us at all.  I guess I thought that was ok - I didn't say anything about it then - but my thinking wasn't right then.  Now I know that it wasn't ok at all.

I understand that, as the article referenced above points out, sometimes an oncologist distances himself from a patient who is in the end stages of disease to protect himself emotionally. There is no doubt the job of an oncologist is likely to be depressing at times ... but that's what they have signed up for.  I consider a patient's relationship with his oncologist to be worth sticking out through the good times and the bad; I don't think there is any valid justification for an oncologist to let himself off the case (and off the hook) just because the treatment isn't working.  As Dr. Moynihan states in the article, “No physician should ever say there’s nothing more I can do. There’s always something more we can do for the patient — if only to be there and listen to their stories and deal with their pain and suffering.”

And to the point made in the article by Dr. Meier of Mount Sinai: Yes, it is failing a patient who has been under the care of a doctor when that doctor chooses to no longer be involved with the care of the patient at the end, especially when, as in the case with my dad, the oncologist plainly promises that he will continue to be involved and will call in a few days to check in and then doesn't.   

To be clear, I am not alleging any malpractice or a breach in the medical care provided to my dad by the oncologist or his practice; I am, however, saying that there was definite room for improvement, and the fact of the matter is that my dad and my family were hurt in other ways by the practices of and the choices made by the oncologist.

The oncologist in the article, who has written his own account of the difficulties of treating a dying patient, said he received no training at all in medical school about "how to interact with a patient" who had reached the end of oncological treatment. I believe this to be the case in most med school programs, and I think it's outrageous.  Here's what I know and what I think all medical people should know: some of the most impactful care that a physician or other health care professional can give to a patient and his family sometimes comes from something other than medicine.


I think I'm going to write a letter to my dad's former oncologist.  It obviously won't change what has happened, but maybe it will impact the way he treats other patients and their families in the future.