Palliative Care and the Great Pumpkin

Sean has had two sleepovers in the past two weekends. He’s exhausted. I am always exhausted. Tonight, as we battled for that last half hour of contentment before resigning to bed, we watched Charlie Brown’s “It’s the Great Pumpkin” and I have so much to say.

As an early disclaimer, I grew up in a Catholic church with incredible priests: men who could take the gospel and make it real and liveable to every participant. Monsignor Mahoney, who became a beloved family friend and ultimately officiated my wedding. Father Mahoney caught my attention as a child in his homilies as he often referenced the Peanuts gang. So that my theology goes back to Charlie Brown may seem brilliant, but it is admittedly not entirely original.

For those of you who haven’t seen “The Great Pumpkin” in a while, I am here to provide a brief reminder.  Charlie Brown’s best friend, Linus,  is filled with anticipation and joy about the upcoming arrival of the Great Pumpkin.  Per Linus,the Great Pumpkin rises out of the pumpkin patch and brings toys to all the boys and girls. Linus foregoes trick or treating awaiting the arrival of the Great Pumpkin. Linus’s sister, Lucy, is verbally outraged at his foolish belief and behavior. Charlie Brown’s smitten sister, Sally, stays with Linus, believing they will celebrate the Great Pumpkin’s arrival together.

Spoiler alert:  the Great Pumpkin doesn’t come. Sally is enraged. Linus is dismayed. And mean Lucy, in spite of herself, rescues Linus from the patch and lovingly brings him back to  bed. Upon awaking, Linus professes NO remorse to Charlie Brown for his devotion to the Great Pumpkin.

Ladies and gentlemen, I present to you palliative care. Hope. The loud voice of second opinion. Tenacity. Discouragement. Support. Unbreakable faith.

Again, with a nod of gratitude to Father Mahoney for illuminating the theology within the Peanuts gang, I offer these thoughts. The Great Pumpkin is special: whether it be as ethereal as the Holy Spirit, as pragmatic as a symbol of hope, or as allegorical as treatment for advanced disease, that Pumpkin represents something worth waiting for. Linus, ever the representative of humanity seeking the Lord, remains steadfast in his belief of this wonderful thing that he has never seen. In this story, Linus is Faith 101.

Linus’s faith is unwavered by the mockery of his friends and especially his sister. Linus’s faith becomes a clear and shiny hope, an anticipation of a delivery of belief. Linus is every parent of a child with cancer. Linus is a stage IV patient returning to MD Anderson. It isn’t that Linus doesn’t hear the Peanuts gang mocking him, and it most certainly isn’t that Linus doesn’t want to trick or treat. To be sure, Linus takes all of that in but is instead drunk with hope that no one can dare call false because they don’t know any better.

The night in the Pumpkin patch is the perfect allegory for a season of disease treatment. Linus and Sally stay side by side, certain for the arrival of the “Great Pumpkin”. Friends come and mock their choice. They offer the option of leaving for something more fun. Linus at one point becomes so convinced he has in fact seen the Great Pumpkin (which is only Snoopy) he passes out. Eventually, weary from waiting, Sally, the primary caregiver of Linus, leaves in a heap of frustration. Linus seems sad, but continues to hold out all hope.

To me, the most touching and poignant moment of “It’s the Great Pumpkin, Charlie Brown” comes in a scene with no dialogue. Lucy, Linus’s sister, awakes at 4 am to realize Linus is still out in the pumpkin patch. Silently, she trudges out and assists the very cold and sleepy Linus to bed. She doesn’t gloat, she doesn’t ask for thanks. This character who has represented opposition, succombs to love for her brother and seemingly forgives him for his devotion to a hopeful notion.  Perhaps, she even loves him a little for it.

Many many days, I meet patients and families who remind me of Linus. Boldly optimistic and infatuated with hope. For the love of GOD, if I do anything right in my job, I never ever want to squash that hope or depress their inner Linus.  The challenge is how to break the news that the “Great Pumpkin” they thought was coming, isn’t, BUT there is still reason to stay in the patch with a heart filled with hope. The challenge is to remind Sally her time wasn’t wasted and to encourage Lucy to not wait until 4 am to show her kindness.

I love the Peanuts gang and I love working in Palliative care. And I encourage each of you reading, to spend a moment, in a pumpkin patch, along side Linus, with a heart full of hope.

Shepherd Center - part ONE

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.