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.

5 things I wish I could say to my hospice families

Hopespotters! I have essentially neglected the professional side of my blog and for that I am truly sorry. Those of “in the biz” know that sometimes talking about what we live on the daily, can be exhausting. My kiddos are back in school, however, and I am motivated to share (hopefully) valuable messages.

My primary job in hospice is to evaluate patients referred to us, as well as provide information about hospice to them and their families. Mostly, I love my job. I love being the first, intentionally positive, face that these scared and sick people after the word hospice has been uttered. I know it is likely the worst day of their lives and yet I have the sacred opportunity to deliver them some hope.

For more than 10 years I have continued to hold the belief that while hospice can't change the outcome of your or loved ones illness, it can certainly change the experience of it. HOWEVER, I'll admit that I’ve done this long enough to identify some of the frustrating interactions. If you are a hospice professional reading this, I hope you can identify. If you are an individual whose loved one may need hospice in the near or distant future, I hope you remember these things.

1. Saying “hospice” does not speak death into being. Friends: I understand that the word hospice has a scary connotation. Most people in word association would put death next to the word hospice. Those of the older generation are particularly afraid. I understand. First of all, hospice regulations stipulate that a person alert and oriented must be told that they are receiving hospice services. Asking the hospice provider to do otherwise puts their license in jeopardy.  Furthermore, while I realize it is scary, please share with us some trust.  Every single hospice clinician understands the fear that may come from the word hospice. And you, who have come through a medical system known for lack of communication and teaching, have landed at our feet. PLEASE give us the opportunity to be honest about what we can provide and what our shared goals can be. Asking us to take off name tags and not say “scary words” is equivalent to asking us to make your 80 year old parent believe in Santa Claus. 99% of the time the patient knows better than anyone else what is going on and NOT being honest can be the scariest thing of all.

2.  I don’t make the rules.  Hospice, like all other aspects of healthcare, is governed by rules and regulations.  When Dame Cicely Saunders developed the concept of hospice at St Christopher’s in the 1960s, it was for cancer patients only. I am infinitely pleased that it didn't take us long to learn that people die from other conditions and hospice needs to provide care for those people, too. When President Reagan made hospice part of the Medicare benefit, it was a wonderful thing that brought with it governmental restrictions. Understandably. Terminal cancer has a predictable decline that fits the hospice model; chronic disease like heart, lung or kidney don't meet that predictability the same way. And that’s not even to mention dementia or plain old debility. Add to that hospice programs that have, too frequently, abused the benefit and here comes the scary harsh restrictions and scrutiny.  I work for a small, non profit, highly ethical hospice. The HARDEST part of my job is being called to an evaluation for someone who is ill, not enjoying quality of life, requiring significant personal care and trying to explain that the patient doesn’t qualify for hospice. Especially when the referring doc and the competing hospice have said that the patient does qualify.  Families: please understand, Medicare puts out guidelines. Guidelines are open to interpretation. Each hospice entity must make the evaluation with the best information, but at the end of the day, it's a ‘best educated guess’. Please understand that to keep a hospice in business, so that it can continue to provide care for more people, regulations must be abided carefully. And the fact that the regulations stipulate someone be “half dead” sometimes to qualify with a chronic condition, is not something I wish to defend.

3.. I can’t make this go any faster. Per the above, I get many calls for evaluations for patients, most often with dementia, that are dismayed when I cannot qualify them for hospice. On this point, I want to be perfectly clear:  I get it. I am sorry. Every DAY I am asked to see patients who are confused, incontinent, and completely not like their former selves. I sit with their children trying to explain why they don’t qualify for hospice, but I want to reach for their hand and say, “I know you love your Mom/Dad and I know you don’t really want them to die, but I know that watching them in this existence is hideous. You want hospice because you want to know that you are near the end and I hate myself for telling you that may not actually be the case. Forgive yourself for these thoughts. Visit them when you can but guard your heart at the same time. Mom/ Dad doesn’t want to be remembered this way.” Hospice is great care for end of life, it is not chronic geriatric care. I wish that existed so that I could offer it to these tear welled eyes.

4.  I can’t make this go any faster/ or slower.  Hospice can, at times, be a tale of two cities: the best of times, the worst of times.  When evaluating someone with dementia or chronic disease, I hate disappointing needy family members by not being able to provide the service.  The flip side is meeting a family with an acutely ill loved one, often with cancer, young or old, who have reached the point of crying for mercy and hospice is brought in. My initial job is somewhat easier in that scenario because I know I can dispatch the troops to provide assistance and comfort. For me, I get a little caught between do I go away entirely because the team is in charge or do I stay in touch so they don’t feel abandoned since they placed their trust in me initially? When I stay involved, I am always perplexed by/ troubled about how the loved ones respond to the actively dying process. In the hospice world, we often compare actively dying to active labor- the final stage before a critical transition.  Just like in child birth, some people accept that nature is dictating the course, but others panic and want a quicker resolution. In hospice, our singular goal is to eliminate the suffering of dying from the patient and their loved ones.  How quickly or slowly this process goes, is not in our control.  Believe me, we understand the icky factor and the accompanying anxiety.  Above all, we get this.

• 5. We really do care, probably more than you know. It is hard to genuinely convey to a patient and family that you’ve just met, how truly moved you are by their situation. As a hospice clinician, it is very common to have someone say, “I don’t know how you do what you do.. You must be very special.”  The sarcastic side of me wants to side grin and say, “Well, yes I am” but the true answer is there is much to gain for those of us who do this work. In the best cases, with the best teams, whom I presently work, the fact is the pain we see really does hurt us. Suffering and a bad death are as devastating to us as it would be to a heart surgeon who lost a patient on the table. Death is not our enemy but suffering is.  We are not Angels, if we are in it for the right reasons, but we are tireless advocates. The rules frustrate us as much as they do the lay person. The inadequacies of the healthcare system in dealing with the advanced ill wound us. Our desire to help tend to the dying and their loved ones is a passion, often ignited by disgust in what the ordinary healthcare system ignores. And while we care deeply, our job is a job and we must keep your loved one in the same priority Iine as all the other for whom we care. Please allow us, especially as nurses, to introduce you to to the other members of the interdisciplinary team so that you and your loved one can be supported best.

SO there is my first top 5 list. Bloggers agree that lists are the “thing” to capture readers. My hope is this list captured readers who might be helped by these thoughts.

Click here to subscribe

Subscribe

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.

Turning Thirty

Happy St. Patrick’s Day, Hopespotters and greetings from sunny San Diego! Today I get to participate in something so fun that I wanted to share.

I am here in San Diego to co-present at the World Congress of Continuing Professional Development. Many of you know that presenting to healthcare professionals is a passion of mine, as I love to share and learn the stories of our days and the things our work teaches us. I am here thanks to Anne McSweeney, President and founder of CEU Concepts who made this happen, my fairy godmother who shared some frequent flier miles and my family and employer who support me in innumerable ways. Oh, and I am here thanks to one very talented and special guy, Tom Wilner. Tom is the writer, producer, performer and inspiration for a very unique play, “Turning Thirty”.

From its website: Based on a true story of a man battling testicular cancer, "Turning Thirty, The Musical" is a journey of courage, love, hope, and family.  With styles of music including rock, gospel, country, jazz, and swing, "Turning Thirty, The Musical" takes you on an incredible ride.

The story begins on the thirtieth birthday of the main character, Conlan. He enjoys his work. He and his wife are thinking of starting a family. However, an unexpected and unwelcome visitor arrives to change their lives forever. Conlan learns that he has testicular cancer and must go through several operations to battle it. His cancer is personified as T.C., a character who sees herself differently than one might expect. "Turning Thirty, The Musical" explores the needed surgical procedures and medical tests, the support of family and friends, and even the humorous side of the struggle through song. As Conlan learns that the sword is not able to stop T.C., he struggles to save his life while trying to bring new life into the world. Join Conlan, his wife Halle, T.C., Dr. Saxon, and The Wizard in an unforgettable story.
 

Tom’s play is brilliant. As a cancer survivor, the daughter, sister and friend of cancer survivors, I feel like I can say with authority that Tom captures the total cancer package: the highs, the lows, the fear, the hope, the anger and the crucial need for love and bravery. Without spoiling too much, heartfelt and beautifully performed songs like, “I’ve got life and life is good” or “I’m here for you” bring forth the emotional experience of the cancer battle. However, songs that describe life with one ball or that are titled “Masturbating in a cup” illustrate the lesser shared indignities, frustrations and sometimes even humor that come along in the journey.

This summer was the first time I had the opportunity to see Tom perform “Turning Thirty” and I was slated to moderate a discussion with nurses and social workers immediately following. My purpose then, just as it is today, was to help attendees use all the “feels” that they experienced while watching “Turning Thirty” and translate them into improved communication skills with their patients dealing with advanced illness. Having never seen the performance myself, I was somewhat apprehensive.

As is often my practice, I chose to invite some friendly faces to fill the audience in case I was a total flop. Among others, I invited my parents. My Dad, also a testicular cancer survivor, later admitted to me he hadn’t dreaded anything so much in longer than he could remember. But as one of my best supporters, he showed up. That showing up thing is so huge, you know?

By the end of Tom’s performance, everyone, including my Dad, was on their feet cheering. The ultimate “we laughed, we cried, it was so amazing” kind of experience. And that has been true each subsequent time Tom has performed.

Participating in this unique and innovative combined production that was Anne’s vision has brought to fruition an experience that embodies so many of my passions. It has been said that if you are lucky enough to be a cancer survivor, you are lucky enough. That may well be true for most, however I like to use survivorship to inspire others. Moreover, I, like Tom, feel passionate about sharing the whole experience - good and bad, cold and loving- in an effort to better it for those currently in the fight. Tom, with “Turning Thirty”, does this masterfully through song and story. I, too, try with stories and literature and showing up day after day at the door step of patients and families who are scared and confused. My purpose, which I try to infect into other professionals to whom I present, is to arrive with a tool kit of competence, compassion and hope.

If I say so myself, the Tom/ Anne/ Jenny show in San Diego was a great success. It was clear that the audience really connected to the performance and presentation. Sometimes working in hospice is hard and some days I wish I had chosen another path. The ability to take my personal and professional experience to opportunities like these really does make it all worth it.