Note: Like many of the pieces to this story, this part is full of emotion, in this case about two things that are very important to me - my dad and my profession. I know LOTS of health care workers including many OT's, PT's, and speech therapists who are excellent at what they do and who are dedicated to going the extra mile to advocate for their patients and to meet their patients' needs. Unfortunately, though, the majority of those with whom we came into contact during my dad's illness were not of that caliber, a fact with which I find it very difficult to reconcile. Here's the story ...
Like lots of kids starting off in college, I
really didn't know what I wanted to be when I grew up when I left home to go to
college at the age of 18. It was my dad who took a good look at what my
interests and my strengths were and who eventually found out about occupational
therapy, a field in which I have loved practicing for the last 25 years.
I think some people just kind of fall into a
career that they see as better than nothing or just
so-so, some go with something that motivates them with money, and some just
punch the clock while hoping that something better comes along. And then,
of course, there are the lucky ones like me: those who somehow find their way
to doing something for a career that they feel they were meant to do, something
that, while not always fun or perfect in
every way, gives them purpose and intertwines with whom they are in such a way
that they know they are following their calling. I am one of the lucky
ones, thanks to my dad. That's why part of what happened while he
was sick disturbs me on such a level that I am afraid that a part of me will
always be left feeling disheartened and disillusioned.
 |
| Steps to nowhere |
The first contact we had with the
world of rehab during Dad's illness was just a few days after his
surgery, and right away things started out with a series of fumbles and
ball-dropping. The slew of physicians on Dad's case kept telling us that
Dad would begin to be seen for Occupational Therapy ("OT") and
Physical Therapy ("PT") as soon as he was transferred out of the
ICU onto a regular floor, which happened early on the Friday afternoon after
his surgery on Wednesday. When no one from rehab showed up that day or
the next morning, we asked again when it would start, and at that point we were
told they “don’t do therapy on the weekend." Evidently, though, the
doctors weren’t aware of this policy because when the physician’s assistant for
the neurosurgeon came to see Dad around noon on Saturday, he was surprised
to learn that therapy services had yet to start for Dad. Evidently he
followed up on it, because about an hour later the OT and the PT showed
up. They had Dad sit up on the side of the bed and use the walker to get
around the room a little (he was unsteady during both of these tasks), and they
checked his movement and strength (fine on the right, not good on the left).
All in all, the two therapists together were with Dad for a total of
about 20 minutes, about half of which time was spent with them telling us that
they thought he needed to go to an inpatient rehab hospital for a week or two
and that we should visit a few in the area right away since the doctors were
already talking about discharge from the hospital in a couple of days.
Once the initial mini-therapy session was
over, my family was left to figure out what our next step was, with the
knowledge that we had to work something out in the next 48 hours or less or
essentially Dad would be sent home with only a follow-up appointment with the
oncologist. Even now, thinking back to that time gives rise to the sound
of a clock ticking loudly in my head; especially considering that we
had just been given the news of how severely limited Dad's time was likely to
be, given his prognosis. It was nothing short of shocking to
think that after only a brief session of therapy the hospital staff seemed to
feel that it was just fine to push us out of the nest, even though there was no
possible way they could know if we were ready to fly or not (we weren't!).
And so we were left completely on our own to
find a suitable rehab facility in essentially one day (a Sunday at
that!). Keep in mind, too, that at least one of us had to stay right with
Dad every second of the day and night, too, because of his impaired balance and
mobility and his safety awareness issues, at the same time that we were
literally left to use Google and the yellow pages to find some place that we
felt could have a positive impact on Dad's future. To say that the task
of figuring out what to do next was daunting is a vast
understatement.
That Sunday afternoon, we toured the only two
rehab facilities in the area that took Dad's insurance and that met our
criteria, which at that point had essentially been whittled down to somewhere
that had therapy services available to be carried out 7 days per week, was clean
and safe, would allow around-the-clock family visitation, and had an opening
the next day. We were also hoping to find a place with a Case Manager so
that while Dad got his therapies and finished recovering from the brain surgery
from the week before, we could get the support and referrals we needed to
modify my parents' house to make it safe for Dad to go home and to go ahead and
set up all of the follow-up care that would be needed after discharge. We
settled on the second place we saw and let the admissions coordinator know that
we were seeking a very short-term stay with aggressive therapy services,
probably a week at most so we could then get Dad home and have him get ready to
start treatment for the cancer. The coordinator said that could be arranged.
We were relieved and felt that we had a solid plan in place for the time
being.
From the minute we arrived at the rehab
hospital, though, I felt there was a lapse in communication and a gap in the
services that should have been provided. As Dad read the newspaper in bed
and Mom and I unpacked, the Rehab Director came by to meet Dad. In
talking to him about Dad's medical history, I reiterated that we were seeking a
short-term stay of about a week with the goal of getting intensive therapies
provided for Dad so that he could get a jump-start in his recovery. The
Director said that the therapists there would evaluate him and then the team
would report back to us with a plan. I told him that we would like to have
input into the plan and that we were also seeking recommendations about any
equipment and follow-up outpatient therapy services that Dad would need after
he left the rehab setting.
Very early the next day, we were presented
with a copy of the schedule for Dad's therapy sessions, which were to begin
that morning. The schedule said that Dad would get OT, PT, and Speech
Therapy (to work on memory) back-to-back starting at 8 a.m., and then he would
get more therapy that afternoon. Good plan, except the OT showed up 45 minutes
late, which threw off the entire schedule. In what became a
pattern during Dad’s stay there, the therapists juggled things around to try to
fit Dad in, and oftentimes Dad and the family member who was with him were not
informed of the changes and/or the scheduled ended up not being able to be
adjusted and some of his therapy got left out. As a result, over the course of
his rehab stay, Dad did a lot of waiting, and, as par
for a brain injury like his, he was having trouble dealing with schedule
changes or uncertainty. He asked many times what was next, but the answer
didn't seem clear to anyone around.
In the afternoon of Dad's first full day at
rehab, the Director came into Dad's room and told my aunt, who was staying with
Dad while Mom went home for a wardrobe change, that patients there typically
stayed for a couple of weeks or more. He said that the therapists would
present my family with a plan in the next couple of days. When my aunt
called to tell me about the conversation, a red flag went up in my head: before
we had made the commitment for Dad to come to that facility and less than 24
hours prior to that time, I specifically told the Director that we only wanted
Dad to be there for about a week. Even if the guy didn't know ANYTHING AT
ALL about Dad's prognosis, all he had to do was google "GBM" and he
would've immediately seen why we were so concerned with time. Just in
case the prognosis that we'd been given had any merit at all, we wanted Dad to
be able to do what he wanted to do, and it was becoming clearer by the minute
that staying there was not of his preference.
When I got back to the
rehab center the next evening, I was told that the Director wasn't on site but
that it would be conveyed to him that I needed to speak to him. He didn't
come by all the next morning, and that afternoon we went for Dad's first
appointment with the oncologist, after which I had to leave to go home so I
could go to work the next day. After a round of phone tag the following
day, I finally got him on the phone, and he told me that the team had presented
the plan for a 3-week long stay to Mom and Dad and they'd agreed. I was
stunned that the rehab team had met without input from my family; they hadn't
asked any of us the first thing about how my parents' house was structured or
what my dad hoped to be able to do when he was discharged. He
insisted that with the extra time Dad would be “much more likely to achieve the
team’s goals of supervised/modified independence,” which in rehab terms means
that a person goes home able to take care of himself with special equipment
(like a walker and a shower bench) but would need another adult to be nearby in
case he needed to ask for assistance. He told me he planned to go over
the specifics of the goals the therapists had set for Dad (goals that were
set without any family input), and that he would meet with me when
I was at the rehab facility in a few days.
I see that conversation now as
almost brainwashing; I am no sucker, and, like the rest of my family, I was
fierce in my effort to do what was right for Dad, but somehow the guy convinced
me that he was right. Maybe it was because I was totally sleep-deprived
and stressed-out, maybe it was because I presumed that given his position he
was experienced and knew better than I did, maybe it was of the belief that I
had that people were there to help us in our time of need without an agenda of
their own. Maybe (maybe even likely) it was part of the
bargaining process that my family was willing to participate in: if it
took having Dad stay at rehab for longer to get him back on track, of course
that's what we would do! Maybe it wasn't even that the plan
to have him stay longer was wrong; certainly, though, from my current
perspective, the way the plan was developed and presented to us was absolutely
not right, and, even worse, the quality of the services and the assistance that
we were provided as part of that plan was far from adequate, both in my
personal and in my professional opinion.
We were also in the midst of dealing with meeting
Dad's needs around the clock and with the huge paperwork demands for legal
things like getting medical power of attorney and financial things like
checking into filing for disability and follow-up things like filling in the
10+ pages of detailed information required to get Dad into the Duke program.
Everyone in the family who was involved in Dad's care wanted to do what
was best for Dad, and it was easy to believe that the plan proposed by the
rehab team was just that. And so we threw ourselves into doing what we
thought was based on what we thought was their expertise; we agreed that Dad
would stay at rehab for three weeks, and we voiced our mission over and over to
the staff that in that amount of time we wanted to have the house set up for
Dad, any necessary equipment in place, and all the follow-up services lined up
so that when we left there, we were 100% ready for whatever was coming next for
Dad.
Besides the plan for the length of time Dad
was to be at the rehab hospital, though, there were other issues that I also
felt (and still feel) were being mishandled. I sat in on several therapy
sessions with Dad while he was there. With my rehab background and having
spent so much time with him since the onset of his illness, I knew what his
deficits were; I also knew about brain injuries and about what the point of
doing certain activities as part of the therapy sessions were - but Dad
didn't know either of those things. Pre-cancer, he didn't, and
certainly in the midst of everything, he didn't, and it was part of the job of
the therapists to try to inform him of those things. As I've mentioned,
Dad detested inefficiency; he used to comment to me that he thought
"all of these new-fangled training programs for runners are just
money-making schemes," and then he'd add "Here's the real
secret to becoming a better runner: RUN MORE!"
And so it isn't hard to imagine the frustration, the boredom, the feeling
of stagnancy that he must have been feeling when the therapists asked him
to do things like matching cards and sorting little trinkets into piles,
doing word searches and recalling random words called out to him, and
performing leg lifts ("With no weights AT ALL?" Dad
incredulously asked the PT the first time she told him to lie on the mat and
lift each leg ten times.) and going up and down the make-shift set of wooden
steps in the middle of the therapy room ("Steps to nowhere," Dad
muttered prophetically as he went up and then down the stairs again
and again as part of a PT workout.) Dad didn’t see the point of many of
the activities; he thought they were a waste of time and childish, and in many
cases, I didn’t disagree. It’s hard to be motivated when you don’t
see the point, and the point is much more unclear when a person has suffered a
brain injury. Over the course of the time Dad was in rehab, I watched him
go from being fairly upbeat and ready to face his charge, to being openly bored
and confused about the point of things, to being aggravated and resentful
during his therapy sessions.
But still he tried his best, each and every time he was asked to do an
exercise or a task, even when he didn't feel like it and even though he didn't
see the point. The couple of times he requested that a therapy session be
cut short, he later made up for it by doing extra repetitions and by asking one
of us to quiz him on something; he seemed to think that by doing
"homework" he would get to go home early. But again, the payoff
from doing the work wasn't as deserved; not only did Dad not get discharged
early, he didn't make the progress we had been assured that he would.
Believe me, I know there are know
guarantees in life; I knew it then too, from a professional standpoint more
than anything: sometimes a person can put forth 100% effort in therapy sessions
and still not meet the goals that have been set. However, what I also
know is that it is the responsibility of the rehab team to reassess and regroup
whenever necessary, and, if independence doesn't seem to be in the cards at
least at that point for the patient, it's their job to make an effort to set
that person up with adaptive equipment, follow-up services, and support so that
the goal of working towards ensuring safety and some degree of satisfaction on
the part of the patient is achieved. That part is something we as health
care workers can control, the follow-through and the empathy and the
compassion, even if they technically go beyond the spectrum of our job
description.
Besides having Dad get better through therapy
sessions while he was at rehab, our second goal for during that time was to
have a social worker or someone like that to help us coordinate everything that
was going on. Mom and Dad first met the Case Manager on Dad's fourth day
in rehab when she came by Dad's room (not great when you consider we were
originally only planning to be there for a week); she told them she would help
with any legal paperwork and also with coordinating services that would be
needed after discharge. She said that the team would meet the following
week to decide how much therapy Dad would need after he left rehab and whether
they recommended he be seen for therapy at home or in a clinic as an
outpatient.
After that, I tried to contact the Case
Manager by phone but kept getting her voice mail and did not get a returned
phone call despite leaving repeated messages. Several times when I was
at the facility I went to her office and left messages with the nursing staff
that I needed to talk to her; I recognized the urgency of getting the ball
rolling for after-care services and supplies, and I was shocked and angered as
it became more and more apparent that the Case Manager not the rest of the
staff there either didn't see the importance of it or - worse - they just
really didn't care. I called it "watching the Cancer Channel;"
these people evidently were just find with putting in their 8 to 5 and then
going home without another thought about their patients - if they aren't at
work ("watching the Cancer Channel"), to them, Cancer isn't real, it
isn't happening, it isn't their concern.
Over the weekend, therapy services were sparse
despite the fact that we had been told before admission that patients like Dad
who were there for short-term stays would get 6-7 days of therapy per week.
Dad was restless and bored; for him, there was pretty much nothing to do
except wait for the time that he could go home to come. For us, though,
there was a seemingly endless list of things to do. One of those things
was installing grab bars and getting other adaptive equipment like a shower
bench set up at my parents' house.
I asked for advice from the therapists at the
rehab center on this but was told we should "wait and see," an
approach that seemed to us to be at best unreasonable or lazy and at worst
careless or reckless. I consulted with my physical therapist and
occupational therapist friends - most of whom are pediatric therapists like I
am - and then I used my friend Google to try to figure out at what height to
mount the grab bars. Because the therapists at the rehab hospital
couldn't/wouldn't (what's the difference?) give us names of contractors or home
health therapists who could install the equipment, my husband and my
brother-in-law installed grab bars in the bathrooms by the toilets and in the
shower, rolled up throw rugs for safety when Dad used the walker, and
rearranged furniture to make the house more accessible. If we couldn't
find help to climb Mt. Everest, by DAMN we were going to work together to climb
it anyway.
The days of therapy sessions were peppered
with unexpected cancellations and rescheduling of therapy sessions for reasons
that were not always explained to us, early morning wake-ups by the staff for
deliveries of breakfast trays and medications ("The day shift gets mad
when they get here at 6:30 a.m. and we haven't gotten all the trays and the
meds out to the patients yet," one night-shift nurse told me when I
asked about the earliness of the delivery. "Wow. Just wow,"
I thought, as I gritted my teeth and told myself and Dad that we just had to stick
it out a little longer and then we would control our schedules for things like
that.). Somehow the speech therapy services got switched over to being
provided by a student speech therapist, a young girl who was nice enough but
obviously lacked the knowledge and experience that we so desperately needed and
expected. (Maybe they should've had the student provide extra sessions of
speech therapy for Dad, for free, instead of billing us full price for her
sessions as we later discovered they did.)
On the morning that we began Dad's last week
in rehab, a nursing aide helped Dad into the shower and then stepped out of the
bathroom for a couple of minutes, during which time Dad got up from the shower
bench and tried to use his foot to dry water on the floor with a towel, which
resulted in his falling. Luckily, Dad wasn't hurt, but the fall
highlighted the fact that there had really been no improvement in his safety
awareness since he had gotten to rehab.
After this incident, I called the rehab
director to assert that Dad should not be left alone, even for a minute,
and to inquire again about getting recommendations and orders for things that
would be necessary after discharge, including home health equipment, a
handicapped parking permit, outpatient therapies, and insulin training.
No one in my family ever heard back from the social worker, the woman whom
we had been told was our Case Manager. Eventually we caught on to the very
obvious fact that the onus was on the patient’s family to figure out what
needed to be worked out before the patient went home. I thought it
was absurd that we were the ones having to make a list and
chase down the support we needed; I shutter to think what would have happened
otherwise.
After being asked at least a dozen times by my family when
Family Education Day would be held so that as many of us could schedule to be
there as possible, the Rehab Director informed us that the training would be
two days before Dad was discharged. We told him that was going to be
tough to work out for most of Dad’s family; we were all traveling from other
cities and were piecing together what needed to be done in between working and
taking care of what needed taking care of on our own home fronts. He said
that there wasn’t another option available for this, though, and so I took the
day off work and went to the training. During the training, I inquired
about getting an order for a wheelchair since Dad was unable to cover
long-distances without totally wearing himself out. I asked AGAIN about
insulin training and seizure training, and I brought up my continued concerns
about the need for emotional support. To all of it, we were told that the
recommendations would be given to us in the discharge paperwork, which we’d be
given when Dad was on his way out the door.
At last, though, the day of discharge for Dad
came, and we were able to take him home to his house, which had been set up to
meet his needs, no thanks to anyone at the rehab hospital. We called and
made an appointment for someone from a home health agency to come to the house
to go over what types of services we could get for Dad, and it was decided that
he would get OT, PT, and Speech Therapy at home.
Right away I asked if the therapy sessions
could be set up on a consistent schedule; it actually shocked me when I was
told no, that the therapists each handled their own schedules, and after a week
or so of dealing with them coming in and out of the house throughout the
day, it became clear that we were once again at the mercy of a group of people
who either just didn't get it or just didn't care. It was of great
frustration that the therapists did not seem to coordinate with each
other at all and that they appeared not to even consider the
sleepless nights that were going on at my parents’ house or the desperate
need for routine for Dad and Mom and those of us who were there to support them.
As with the therapy staff at the hospital and at rehab, it soon became
apparent that they had little to no experience with working with patients with
brain tumors; they tended to treat him more like a stroke patient, and those
two things are vastly different.
One day the PT came at 8:00 a.m. (an hour after Dad had finally gotten to
sleep from the night before!), the OT came at 11:30, and the Speech Therapist
came at 3:00, thus thwarting any type of bid for a nap or for venturing to
Sonic for a large Diet Coke, Dad’s main pleasure for the day on many
days. The next day, the therapies were at 9:30, 1:00, and 4:00.
There were lots of last-minute schedule adjustments and some cancellations by
the therapists, too. The only consistency from the home health agency was
the inconsistency. Therapy was hard for Dad; he wasn’t the
Road Warrior/gym rat that he had been for 50 years before. He tried to
get on the recumbent bike for some extra exercise some days, but mostly he just
tried to tolerate the sporadic visits of the therapists and a select few other
people who stopped by as he fought off exhaustion.
Thinking I could tie Dad’s love for swimming
in with his distaste for the mundane Physical Therapy sessions, I called around
looking for a therapy clinic with a pool, but I was told time and time again
that Dad didn’t qualify due to ambulation limits and the possibility of
seizures. I'm not so sure that the reason they wouldn't even consider
taking him on as a patient wasn't liability; none of them were even willing to
meet him much less try to figure anything out that might help us.
I was taught in OT-school that goals for
therapeutic intervention should always be based on what the person wants to do;
I don't recall even once while Dad was sick having a health care professional
ask him or any of us what he liked to do or what his goals were. He
would've said going to a Grizzlies' game, going to the movies, going to Barnes
& Noble, maybe even being able to walk his dogs around the block. I
can't for the life of me figure out why those things weren't addressed by those
therapists, why they seemed to think it was just fine to have Dad work on
stacking cones, squeezing a ball, and doing leg lifts instead of at least
trying to focus on things that mattered to him. My family was doing what
we could to facilitate the things like that that were on Dad's Revised Bucket
List, but it would have been nice to have some help. I've taken kids to
the circus, to McDonald's, and to a playground as part of therapy sessions in
the past; I don't see why Dad's therapists didn't see the value in making the
effort to support Dad's objectives.
After Ashley left, the OT came for a previously scheduled therapy
session. Jennifer told the OT what had
happened, but he really didn't seem to get it. He had Dad
do some hand exercises from the recliner. Jennifer asked the OT to
help her get Dad to the bathroom before the guy left; he acted annoyed, but he
agreed. The two of them assisted Dad in getting up and behind the walker
but quickly realized there was no way he could walk at all; he was just too
weak. They ended up pulling a dining room chair over to Dad and lower him
onto it, and then they pushed him in the chair along the hardwood floor into
the bathroom and then into the bedroom, at which point the guy hauled ass out
of there right after Dad was back in bed, leaving my sister alone at the house
with Dad with no way to get him out of the bed if he needed the bathroom again
or anything else for that matter.
Looking back from this vantage point to the time
while Dad was in the rehab hospital and to the time he spent in the home health
therapy sessions, I have to say that it was a complete waste of his time.
It makes me feel ashamed to be part of a professional group with some
members who choose not to go the extra mile, or possibly even not to fulfill
their job responsibilities - or, taking it even one step further - even to step
up to help a fellow human being. My family was desperate to find a way to
help Dad to get better, or failing that to make accommodations for him to help
preserve his dignity and his enjoyment of the time he did have left; we truly
felt that we were fighting for his life, and we desperately needed help from
someone who could do something to help us in that fight.
 |
| This was taken on the last trip my family took together before my dad's illness, less than two months before his diagnosis. |
About two and a half
years after my dad's death, I changed jobs. After almost two decades 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 a large 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 many other 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.
