This. Is. Us.

Hopespotters, HELLO!

Given the feelings and sentiments we share here on HOPEspot, I am guessing many of you are “This Is Us” watchers. It’s been a week since William’s death. Are you OK?

C’mere.  We need to talk about this. Even if you don’t watch “This Is Us”, we need to talk about this. Please don’t quit reading if you’re not a watcher, I’ve still got something to say.

C’mere. S’OK. Have a cookie. S’OK.

To be clear for all readers, “This Is Us” is the hit NBC show that started Fall 2016. From the first episode, we met William, the biological father of one of the show’s leads, Randall. William abandoned Randall on the steps of a firehouse as an infant because Randall’s mother was a junkie and William was struggling with his own issues. In the pilot episode, Randall finds William and learns that William is struggling with Stage IV cancer. Randall brings William into his home, introduces him to his wife and daughters and watches a beautiful and redemptive love take place. William is appropriately remorseful for his past and refreshingly inspiring in his enthusiasm for the seeming last days of his life.

In last week’s episode-- SPOILER ALERT-- Randall takes William on a road trip back to his hometown of Memphis. Conscientious Randall brings maps that William throws out the window. William tells Randall to roll the windows down and turn up the music. Randall brings William to his childhood home where he pulls out a treasure of toys he buried as a boy. They visit the “gravesite” of Randall’s adoptive father. They laugh. They drink from the water fountain that was designated for ‘whites’.  William finally returns to his cousin, who he left in a bind years ago when he was called to take care of his beloved mother, and asks for forgiveness. Forgiveness is mercifully received and the two reunite to make beautiful music together.

There’s glorious joy shown on this father/ son trip until the next morning when William wakes up in total organ failure and needs to be brought to the hospital. Randall learns that William is imminently dying and their interaction from that point goes beyond Hollywood special and reaches into spiritually perfect. It is this point that so many of my friends broke down when watching. My dear friend, Ivette, is still in a puddle, and she is a warrior who knows life is hard.

What happens in that eleventh hour is everything, and I will tell you why. William, who met Randall as a child abandoning junkie, has been redeemed as a loving father and grandfather. William had an opportunity to give thanks to the Man who raised Randall. William gave Randall his final book of poetry. William was forgiven by his cousin. William told Randall his life was hard, but he was glad for who was there when he was born and who is with him as he dies.  Things that needed to be said, were said. Forgiven, forgiven. Gifted, gifted.  William was assured his legacy would be one of love and he would not be alone in death.

C’mere. S’ok.  It’s sad. And it’s hard to watch. I’m really going to miss William, too.

But now I want to say what experiences compels me to say and I don’t want to be preachy about it.

William did it right. William’s best chapter was his final one. It is for possibilities such as William’s that I push hard to promote hospice.

William didn’t die in hospice, but William had a hospice death. William had opportunity to complete his final work and did so, seemingly, with an appropriate amount of comfort. I HATED to see William die, but we, as viewers, knew when we met him, that he was terminally ill. We cried because WE GOT TO LOVE HIM and that was spectacular. It was going to hurt to lose him in any case. It hurt worse because we got to see the goodness in him. It should hurt less because we got to see the goodness in him.

William is fictional, but his loss was all too real for viewers. It was painful because none of us are immune to loss and reliving one in such a personal way brings all of those feelings right to the surface.

For a long time, I had some well rehearsed “talk offs” about working as a hospice nurse. “Oh, it’s a privilege to be there for families at such a difficult time.” Or, “I know I can’t change the outcome, but I know I can change the experience.” I believed, and still believe those things.

But what my humanity has come to show me unconditionally, is there is no treatment for the sadness. Even a beautiful death like William’s, is sad. I find myself with increasing years of experience more, not less, sad.

We had our annual memorial service for Weinstein Hospice this past Sunday. I love and dread this event. I believe the way we honor those who have died in our program over the past year is beautiful. And I know that time for remembrance is powerful for me.

This year two things stood out strongly for me. First, our chaplain read Psalm 23.  “Yea, though I walk through the shadow of the valley  of death…” Her words were unforgettable. Grief is the valley of death but the psalm reads that we walk THROUGH, we do not, though at times we might feel like it, curl up and lay down in it. Bravo, Donna Faye.

Then, she used her beautiful voice, to sing “For Good” from the Broadway musical, “Wicked”. If you aren’t familiar with the tune, its message is, “I don’t know if I’ve been changed for the better...because I knew you, I  have been changed for Good.” These words sang into my heart and expressed exactly how I felt about every person we memorialized that day. Each one forever changes us.

Back to William. And the sadness. One of the goals of William and Randall’s road trip was to get to “The Peabody” in Memphis to see the ducks. If any readers aren’t familiar with “The Peabody” it is a luxury hotel in Memphis that features a daily duck march to the lobby fountain and has since 1940.  William wanted Randall to see the ducks and that was the plan for the day that William got sick and died.

No ducks.

But in true, “This Is Us”, there’s redemption and magic in this life style, we, the viewer, see Randall driving back home, tearfully, and stopped on the highway by crossing ducks. The ducks remind him of William’s advice to “roll down the windows” and smile crosses his bereaved face.

For the bereaved who watch “This is Us”. Or who were at Weinstein’s service. Or who just read this and know loss:  C’mere. S’ok. I hope the one you loved left you with the peace the William left Randall. More than that, I hope you find the ducks. And roll down your windows.  “This Is Us” is a hit because it really is ALL of us. I’m sorry you are sad. Keep walking through that valley.

And never ever stop HOPING.

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.

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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.