Home: To Go or Not to Go...

"Just please let me go home. I don't care if I die, at least I'll be in my own home." Her words still haunt me. We did not follow her crying pleas to go home, instead we sent her to a skilled nursing facility. Her primary care physician admitted her directly after an appointment in his office. The arthritis in her knees was not benefiting from outpatient treatment and she could barely walk around her apartment. She refused to live with her children or have additional paid caregiver assistance even though finances were not a consideration. Her family was also concerned about her living alone but could not imagine a nursing home, "She grew up an orphan in an institution and we cannot imagine sending her back to one at the end of her life."

So here's the dilemmia... do you allow someone to go home as they wish despite knowing that they will likely die? Or do you send them to a place where they can live safely and yet potentially miserably?

In this case, the skilled nursing facility (SNF) felt like the right decision as the patient continued to demonstrate decreased insight into her deficits and ability to care for herself. "I'll be fine, I don't need anyone there," she's say despite spending less than 8 hours out of bed per week and needing an assist to walk or transfer to a chair. Her primary care physician will follow her and if she is miserable, she can... go home.

my good buddy

I sobbed driving home from work yesterday. They let him die. Okay, no, he was going to die. They let him suffer. For the last 5 days Will Ferninger has been telling me and the other therapists/nurses that he feels like he's dying. "I just know it's happening. I can feel it." As a child survivor of the Dresden during WW2, his lung disease began by inhaling particles in air released during the bombings and its aftermath. It worsened over the years as he spent hours/day inhaling flour, working as a baker in the US. Although his lungs were developing pulmonary fibrosis (scarring of lung tissue), the disease never manifested itself until recently. This is how PF is often described, like walking towards a cliff and then one day you just fall off. Once it's symptoms present themselves, it happens fast.

So when Mr. F went from being able to shower himself on 6 liters of oxygen to showering with total assistance the next week and struggling for a breath on 15 liters, we knew it wouldn't be long. And he openly discussed this, but not with everyone. He would not tell the doctor or his family. "How you doing today Mr. F?" "Oh fine really, hope to get better." I overheard this conversation with the doctor the day before he died. But why? Why wasn't he able to tell the doctor how he was really feeling? Machoism?

It happened in the middle of the night, he couldn't breathe. DNR, DNI means there's no turning back. They put him on 100% O2 with a non rebreather and shipped him off to the emergency room at a local acute care hospital. He died in the hands of strangers when we could have made him comfortable. His family was called in the middle of the night when we saw this coming on through the whole day.

But then again, maybe he died in the hands of more kind strangers like the ones he met at our hospital and was able to share so much with. Maybe that's just what he needed at the end of his life- to see so many strangers caring, when early in life he saw so many strangers being cruel (as a child during WW2). And maybe I wasn't crying just about Mr. F. Today my mom is gone 13 years ago. She died in emergency room and my family was called in the middle of the night.

"Will, why are you crying?" Mr. F's girlfriend asked him as tears rolled down his face after he introduced us. "I am crying because she is such my good buddy." Holding back my own tears, I said, "Yes, Will we are good buddies." May you forever rest in peace, Mr. Ferninger. Hope you meet a lovely lady up there who might also call me her good buddy.

Mojo Found!

It is hard for me to remember how or when I lost it. My mojo somehow slipped away over the last two years. I started serving decaf OT and occasionally found myself going through the motions of ADLs. Perhaps it was the overwhelming caseload, the new emphasis on productivity, or the chronic stressful hospital environment. Somehow I lost the enthusiasm that I had when I graduated and I had a feeling I wasn't not alone. Many new grads enter the field full of hope for their potential to create a systemic change, make a good wage, or at least to constantly give their best everyday to their clients.

Yet slowly over time, after consistently hearing, "No, you can't do that" or "Sorry, but we've put a hold on raises for the year" or "I just wanna know if they can go home alone" your career satisfaction begins to dip and you forget the real meaning and purpose of our work. Especially in this economy where the drive is to do more with less. This can be the beginning of a very dangerous slope filled with apathy, unprofessional behaviors, and contagious malcontent. However, I found the antidote. This week in Orlando, I found my mojo.

It has been two years since I've been to an AOTA conference and I had forgotten the inspiring power of this 4 day event. Dancing in the aisles at Opening Ceremony with 3,000 other OTs, meeting and sitting in lectures with Trombly, Fleming, and Gillen (celebrities in the world of OT), testing out the latest inventions at the expo and talking with the inventors, learning the cutting edge evidence for our practice- it certainly has all the elements necessary to recharge one's OT battery. Now I hope to bring this new found energy and rediscovered passion to work with me tomorrow morning!

he's in there

Switched back to the mothership last week (that's what I call the main hospital). So I'm back to carrying my own caseload which I really missed by the end of four months. While it was a nice reprieve to not be so involved in patients' stories, I was reminded how much I gain out of investing myself in my patients. And ask and you shall receive... little did I know that a story was about to come along that would completely require all my attention and energy.

At 26 years old, Mark was on top of the world- living with friends in southie, working in boston, close with his family. Everything changed January 16th when he went skiing with his family and tested out some new skis. He went over a mogul, fell, skis popped off, and he just didn't get up. His dad and sister were immediately behind him and were able to get ski patrol and medics to the scene. He was medi-flighted to the nearest hospital, intubated, and CT showed an intercranial hemorrhage. Somehow his helmet was unable to protect him from sustaining this traumatic brain injury. He remained unconscious for 1 week and was unable to be extubated, so his parents had to decide- to let him go or continue with life saving measures placing a trach and feeding tube. The wild part of this story is that this family has been here before. In 2003, Mark acquired a TBI (traumatic brain injury) requiring bilateral craniotomies. He made a dramatic and full recovery. On one hand, his prognosis may not be good because it's the second time, how much can the brain/body handle? However, on the other hand, perhaps this means Mark is a very resilient person. He may have what it takes to recover, his body/mind may known how to heal itself.

"Unresponsive, but family feels he is responding to their voice and blinking on command." The neuro report did not offer much hope. I went into the room and took a deep breathe, seeing such a young handsome person attached to ventilator just didn't seem right. His eyes were slightly open, but staring blankly, right through you. Looking into his eyes felt like looking into the night sky- filling me with wonder of what lies beyond what my eyes can see. I spoke softly into his ear, introducing myself and my role. Then I said, "If you can hear me, I want you to blink once." And he did. To be sure it wasn't just a coincidence of timing I asked him to repeat, and he did, slowly but intentionally closing both eyes.

So now, I know he's in there. Now I know somebody's home. So I went a little further, explaining to him that he could relax and to let go of some of the tension he was holding onto. I told him not to try so hard. I told him he was in a good place with good doctors and nurses. I told him he didn't have to worry about his family. I told him to just "let go." And with those simple commands, the tension in his muscles began to relax and urine began to flow into his catheter. The nurse was concerned that he hadn't urinated all day! I laughed, "Good you're peeing, see you can let it go!"

This week we will trial sitting him up at the edge of the bed and check his positioning in a wheel chair to get him out of bed. I'm also going to attempt to do a relaxation session with Mark and his mother. See if they can both begin to relax and allow some healing. If it happened once already, why not again? Let's do it!