Life in Jeopardy

Alex, I’ll take standing on my soap box for $200.

HOPEspotters, yesterday, long time “Jeopardy” host, Alex Trebek announced that he has been diagnosed with Stage IV Pancreatic Cancer. This is a devastating disease. Mr. Trebek released a video sharing his news and provided his positive outlook on his situation.  He states the announcement is in “keeping with (his) long time policy of being open and transparent with the “Jeopardy” fan base.

“Just like 50,000 other people in the United States each year, this week I was diagnosed with Stage IV pancreatic cancer. Now normally the prognosis for this is not very encouraging. But… I’m going to fight this. And I am going to keep working. And with the love and support of my family and friends, AND with the help of your prayers, also, I plan to BEAT the low survival rate statistics for this disease. Truth told, I have to. Because under the terms of my contract, I have to host “Jeopardy” for three more years. So HELP ME. Keep the faith and we’ll win. We will get it done. Thank you.”

Friends, I am not about to kick someone when they are down. Let me be absolutely clear that I am terribly sorry for Mr. Trebek and his family.  I absolutely wish him the very best. And until I walk a mile in his pancreatic cancer filled shoes, I am NOT going to judge his reaction. I have NO idea how I might respond in a similar circumstance.

I am, however, going to use this public example as a critical teaching moment because I feel like I have to. There is SO much to unpack in Mr. Trebek’s situation and statement that it would be.. negligent.. for those of us who see these cases to remain silent.

Media around the country today was flooded with well wishes for the long time, beloved game show host. The constant commentary frequently included, “he’s a fighter” and “if anyone can beat it” and “he’s got the right attitude”.

While these are wonderful sentiments, and well meaning I am sure, I challenge the speaker to sit and say these words to someone with Stage IV pancreatic cancer. In their bedroom. Because they can’t get up and get dressed. Because they are too sick. And they just barfed their toast. And they are terrified. And really, really, sick.

Cancer really challenges the adage that attitude is everything. And suggesting it to the patient can be totally out of place.

Further, can we finally debunk the notion of the “cancer fighter”? Everyone who has cancer, had cancer, fears cancer, survived cancer, fights. It is all a fight. A terrifying, soul searching, highly inconvenient fight that often offers strange and scary forward paths. “We didn’t get it all”. “There is a clinical trial that is being offered..” “We can’t do treatment this week because your levels are too low..”

It can be like a blind folded boxing match with multiple, fierce opponents.

Everyone fights, Mr. Trebek. In 20 years of sitting at the bedside of people with your diagnosis, I’ve yet to meet the person who has said, “Eh… no biggy.. I’m just going to roll over..” Even, and perhaps most especially, the patients who have told me, “I am done with treatment” are fighters because they have decided to fight for different things: peace, comfort, dignity.

Fighting for a legacy is still fighting. Without question.

So please, oh please, let’s reframe the “fighter” paradigm and let’s be awfully careful to not assign those who make different choices as ones who’ve “given up”. They’re already afraid enough of that suggestion. It can be crippling.

Mr. Trebek also states he plans to “beat the low survival rate statistics for this disease”. Clearly, I don’t know when the famous game show host was diagnosed or what the situation was that predicated his diagnosis. I can imagine he is in shock, so again, I don’t judge him for his words. But Mr. Trebek, the survival rate for Stage IV is 3%. Yes, I believe in miracles but I also believe in science and the benefit of expert opinions. In my work, the hardest thing is balancing real hope against false hope which is done by restating the question, “what are we hoping for?”

Additionally, Mr. Trebek’s brazen suggestions that he has got the upper hand on his illness makes me worry that there are thousands of very sick cancer patients calling their oncologists today screaming, “Give me what Trebek is having!” If only. If only…

Finally, Mr. Trebek’s statement concludes with “keep the faith and we’ll win”.  I’m sorry. That breaks my heart. For all the millions of people that admire the long time Jeopardy host, I fear there may be some who will deeply believe their faith and their prayers will save him. I believe in prayer and I believe in hope but I recoil when we offer false guarantees. I believe in God. And I don’t question that. I’ve been at the bedside with - I hate to say- HUNDREDS of patients who wanted to believe their faith would guarantee them a win.

When the win isn’t delivered, the loss is exponentially devastating.

Let’s all be mad as hell at pancreatic cancer. It is an asshole. Let’s all pray for people with love and people with cancer and double pray for people we love who have cancer. And certainly, let’s all pray for Mr. Alex Trebek. For what I know of his life and career, he’s very well liked and considered very smart. Unfortunately, neither of these things kept him immune from the deadliest cancer. At age 79, he’s going to face a very difficult situation.

Here’s the upside: “Jeopardy” reaches millions of Americans every night and it helps make them smarter. Let’s hope that Mr. Trebek’s VERY unfortunate situation can be an opportunity- going forward- to educate the American population about hard choices and palliative care.

What if he said instead, “My friends. I have received a devastating diagnosis that is Stage IV pancreatic cancer. I didn’t see this coming and it is very frightening. While there are so many things I don’t know, here are the things I do: I don’t want to spend my time in the hospital. I want to be optimally comfortable. I want to spend my time with my family, reviewing my wonderful life and finishing my business. Therefore, I am resigning my position, that I have deeply loved. Thank you for all you support over the years. Please pray for me and all the people facing cancer. We need grace.

Because in the face of Stage IV pancreatic cancer, I will take grace for $1000. With a daily double for palliative care.

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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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.