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.

Healthcare Decisions Day and a Heroine

I am an admitted control freak. Not my best quality, but an undeniable one to be sure.

So when I have to admit that “things” have a way of working out, I am humbled to say the least.

I had a wonderful time away this weekend- relaxation and good times. Driving home and getting my ‘game face’ back on for the week, I thought about the days ahead.

Monday, April 16th is National Healthcare Decisions Day and I had already decided that the occasion merited a blog. Having seen horrible scenarios play out in ERs and ICUs, I am very passionate about everyone making it a priority to complete Advanced Directives to make their end of life wishes known. 

On my drive home, I thought about ways to emphasize the point about wishes. I thought about my childhood and my compulsion to make a Christmas list. The arrival of the fat Sears catalog was a monumental day for me as a child. I spent hours combing the pages, folding down corners and writing down the many toys I hoped to see under my Christmas tree.

An Easy Bake Oven. A Lite Brite “ultra” set. A Cabbage Patch Kid. A Swatch Watch. A Sony Walkman. Please and pretty please.

I made this list because I lived by two absolute certainties: I was loved and believed to be “good” AND Christmas was definitely coming. Everyone seemed to agree this was a helpful, and became ritualistic practice. When Christmas morning came and wishes were fulfilled, not only was I delighted, but the gift givers enjoyed satisfaction for their efforts. Win. Win. 

Today, I am (chin to chest) forty-seven years old. I still make a Christmas list and a birthday list. I don’t think I am greedy or entitled. I simply continue to believe that I am loved, those holidays are most certainly coming and it is helpful to let my loved ones know what would please me.

So here comes the annual “National Healthcare Decisions Day”. Let’s break it down, friends. You are loved- by friends and family. Hopefully a long way away, you will deal with an end of life scenario. This may be a sudden, catastrophic event or it may be a result of a longer, insidious illness. The brutal truth is, none of us are getting out of here alive. That reality of mortality feels out of control and makes it very easy to deny and ignore. 

Denying and ignoring is a mistake. A grievous mistake. A mistake that could leave your suffering body in an ICU indefinitely exposed to indignities and pain. A mistake that could change your legacy from one you’ve spent a lifetime building to one that haunts your loved ones with memories of tubes, monitors, alarms, and nothing that even resembles peace. A mistake that could permanently divide the people you love most while you are paralyzed to repair that rift. A grievous mistake, indeed. 

National Healthcare Decisions Day is really a marvelous day. It is a day sanctioned for preventing these grievous mistakes and promoting a different outcome. It is a day where all adults, young and old, get to make a list as precious as the one they used to make for Christmas, that details their wants and wishes. It encourages completion of a document that acknowledges the loved of its author and the inevitability of the time it will be needed. 

An Advanced Directive is the modern version, the updated and more practical version, of a living will. It is a simple document that doesn’t require an attorney but provides a checklist about some of the most important choices that need to be made in an imminently terminal condition. It only speaks for its author when he or she cant speak for themselves but it is a near “get out of jail (ICU hell) free” pass. Aggressive treatment and life prolonging measures are always the default for all people, despite diagnosis or age, in the absence of the blessing of an advanced directive.

http://www.caringinfo.org/files/public/ad/Georgia.pdf

So as I drove home today, thinking about National Healthcare Decisions Day, I prepared this plea.  And then an Advanced Directive in the mainstream media came before me and I could have cried with its demonstration of bravery. Things had a way of working themselves out, despite my control tendencies. 

WASHINGTON (Reuters) - Barbara Bush, the wife of former U.S. President George H.W. Bush, is in “failing health” and has decided to no longer seek medical treatment, the office of the ex-president said in a statement from Houston on Sunday.

The former first lady, who is also the mother of former President George W. Bush, “will instead focus on comfort care,” the statement said. She is 92 years old.

The brief statement did not indicate the nature of Bush’s illness but said that she had had a series of recent hospitalizations.

I drove home trying to think about how to write smartly about Healthcare Decisions but lo and behold a heroine stepped forward to lead by example. 

Mrs. Bush has always been a favorite of mine. I actually had the privilege of seeing her speak at a graduation when she shared the wisdom to which I have held tightly. Before I was a nurse who even considered end of life care, I heard this accomplished woman say with conviction, “At the end of your life, you will never regret having passed one more test, not winning one more verdict or not closing one more deal. You will regret time not spent with a husband, a friend, a child, a parent.”

20 years of hospice later, I cannot begin to tell you the wisdom in these words. Absolutely spot on.

So when Mrs. Bush announced today, on the eve of National Healthcare Decisions Day, her wishes for comfort measures, and in so doing releasing her family from guilt and responsibility for what they should “maybe”, I can only be in awe of her.

 Asking for a peaceful and uninterrupted end of life process isn’t as fun as asking for an easy bake oven on Christmas morning. It is scary and lacking with guarantees. It is however brave, loving, and motivated by the same premise of “I am loved and this day will come.” 

Friends, treat yourselves, gift your loved ones, follow in the example of a true American hero. State your wishes and bless your loved ones with the responsibility of honoring your wishes as opposed to guessing in crisis. 

Merry Healthcare Decisions Day!