I have a dear friend who works at the Shepherd Center. My friend is brilliant and loving and smart and incredibly good at her job as Social Worker for the Spinal Cord Injury Unit at this internationally renowned rehabilitation facility. (If you are not familiar with the Shepherd Center, I encourage you to visit www.shepherd.org. It’s amazing.) My friend and I share a dark gallows humor about our jobs - on any given Friday night, over wine, you may hear her and me say, “I had a 40 year old mother with ALS yesterday.” “Oh, yeah, well I had a 21 year old hit by a drunk driver who’s now a quadriplegic and is getting married in May.” “Really? I had a 29 year old diagnosed with stage IV colon cancer.” “Oh. Sorry. Guess I won’t tell you about paralyzed Motor-cross rider who’s wife just left him….”
We have these “one up” conversations, understanding the profound awfulness of the trump game we are playing. There is nothing funny about the struggles we see. They are, in fact, so awful, that we can only behave like we are in a MASH unit, channeling Hawkeye’s humor to keep us engaged in the horror.
My friend, God love her, got me an invitation to speak to the Acquired Brain Injury Unit Team at the Shepherd Center. Apparently, a few patients over the past few months have broken the Shepherd code, bucked the trend, and died. People come to Shepherd for world class rehabilitation, and they get it. People don’t come to Shepherd to die. Furthermore, employees don’t come to Shepherd to help people die.
Enter me, and my “Mary Poppins” hospice bag of tricks. My friend got me invited to speak to the ABI team about end of life care issues. This was a true privilege. One of the things that sustains me through the hardest days of end of life care is the belief that my experience is valuable. My experience can be brought to and shared with clinicians, families, patients that find themselves needing to understand what the next best decision is in the worst of circumstance.
Before my presentation at Shepherd, I was fortunate to spend a day on the ABI and SCI units. I was humbled. Just like people perceive hospice as hopeless work, a notion I work to dispel, I went to Shepherd expecting it to be a (don’t want to say hopeless) depressing place. Most people come to hospice with knowledge of their illness and many are elderly, reasonably ready to close a life well lived. Walking into the rehab room of the ABI unit was like reading a police blotter from hell, all the victims poorly prepared. “Here is 21 year old male hit by a drunk driver…” “Here is 55 year old man who had an unexpected brain bleed during a routine surgical procedure” or “Here is police officer directing traffic run over by a MAC truck”. Run. Over. By a MAC truck. Yet the work I saw taking place, left me anything but depressed.
The vulnerability related fear I felt passing by each beautiful and hopeful patient was humbling. I couldn’t tell if I left the room dizzied by fear or buoyed by hope from witness of the strength of the human spirit.
So I had my research day and I am proud to say I spent many more hours preparing to speak to this special group of clinicians. But how?
Hospice and Rehab seem opposite. Shepherd stories include rehabilitation, recovery, restoration, and battling against the odds, grit and pain. Hospice stories include peace, finality, tenderness, relinquishment. So WHERE can we find the overlap??
Dignity, Advocacy, Leadership in decision making, Empathy, and of course, HOPE!
My task was to share with the team that operate daily off of list A, to expose them to list B, and leave them comfortable with the synergy of list C. My presentation was maybe one of the most researched and heart felt I had prepared. Shepherd evoked passion in me and I was hopeful to provide good information to its clinicians.
I thought I was ready - With message. With understanding. With desire to bring the message. What I wasn’t prepared for was the ‘youth’ of many of the ABI clinicians: OTs, PTs, STs, techs. Of course, my ‘friend’ brought case managers and social workers that looked like her and me, but I must admit I wasn’t ready for the rest of the audience that was significantly younger than me.
As an illustration of what I am talking about, let me share this with you. I had embedded a small piece of the first episode of “ER” in the presentation. Briefly, this clip from a beloved show, presented a wise doctor speaking to a scared and sick young resident. Wise doctor tells young resident that this “stuff” is scary and it is very OK to “feel”. He goes on to say, “people come here for help and their need for help is more important than what we feel.” (It’s warmer if you watch the clip.) I thought it was a brilliant inclusion.
The “young-uns” didn’t even know what “ER” was!!!!!!!
I was unprepared for the age of so many of my presentation’s participants, but shame on me. Of course the therapists that have the invincibility to face patients, devastated by the worst of life’s injuries and unexpected injustices, are young. There’s a little part of me that thinks, “thank you, whipper -snappers” -I need you yelling in (my) ear, denying death, pushing against odds. I am so glad life hasn’t baptized you with vulnerability.
The clip, the talk, the invitation was more important and needed than I originally realized. Shepherd is an outstanding rehab facility, but not unlike so many acute care places that want to deny that people do die. Especially people with devastating injury or disease. Those people deserve opportunity for recovery, but I submit they deserve equal opportunity to state or contemplate that the life that has been left to them isn’t one that is meaningful for them.
Like a squatter that lays a stone, I feel proud and excited that a first step has been taken with the Shepherd Center staff. They are admirable, devoted clinicians- the opportunity to engage them in this conversation is so incredibly fantastic. I’ve been invited for part 2 next month.
Here. We. Go.