“He’s Dying Anyway”

This blog has never been a place for politics. And it still isn’t.

I must, however, weigh in on the current uproar about a White House aide making a comment about Arizona senator, former POW, John McCain.

“He’s dying anyway.”

I’ve heard sound bytes all day about this recent scandal, who said it, who is outraged, who believes its justified and I am only focused on the statement itself.

“He’s dying anyway.”

Many people, feeling people on both sides of the aisle have been offended by this insult to an American hero. People paying attention have responded with thoughts of “this person sacrificed so much for our country”... “he was a hero”... “someone I’ve admired”... “fought for our country”.  When these thoughts and feelings butted up against the statement “he’s dying anyway”, the vast majority of the national media has been shocked and offended.

Let’s be clear. It is terribly unfortunate, but based on what I’ve read and what I know from professional experience, I do believe Senator McCain is dying. Cancer is an indiscriminate evil, more powerful than a POW camp, and has chosen this man as its imminent victim. I wish the McCain family would use words like palliative care and hospice when communicating his condition, but they didn’t ask me. In my opinion, it would be an additional blessing of Senator McCain’s legacy to show the benefit of end of life care, but I am sure I don’t understand all the nuances. For the purposes of this discussion, it seems clear Senator McCain is nearing end of life as a result of his brain tumor.

So if what I perceive is true, he is dying. Why then, is it so offensive for someone to state “he’s dying anyway”?

My son started football training this week and it has been a roller coaster of highs and lows. One of the lows was his hurt feelings that another player called him “slow”. (Good luck making it in football if being called slow derails you, but that’s a different blog). My son was, more than hurt, stunned by the insult. As a Mom, I could only counsel him to say that words hurt, but we, as the recipients, control their impact. I also told him to feel sorry for the “insult giver”, because he clearly didn’t understand the big picture.

Whoever said “he’s dying anyway” didn’t understand the big picture. Because I am here to tell you what someone dying, especially someone who has a rich history and a loving family, like Senator McCain, can look like.

Dying anyway can, in its early stages, look like taking time to establish final legacies, have healing conversations and provide necessary forgivenesses. Dying, if acknowledged at the appropriate time, can allow for bucket list experiences and family preparation. Dying anyway can happen with dignity, comfort, lack of pain and family support.

Dying anyway, in fact, is an oxymoron. Dying my way, or dying this way, or dying okay are more of the things we should all work towards.

And finally, with holding political comments, I must directly address the person who dismissed Senator McCain’s opinions because he was “dying anyway”.  

Lady, I have had the privilege of working with the dying for the last 20 years. Every day I learn more than I teach and I return home stressed but blessed. I am sorry that you think dying is a capitulation and submission because I promise you that is not what I have experienced. The dying I’ve met have bravery and purpose that would humble a soldier. Their work is important and pertinent and nothing they do is irrelevant. I have seen the sickest people do incredibly strong things, finish life tasks and battle to leave a meaningful legacy.

Please remember the adage of the hospice nurse that asked the old man, “what’s it like to know you are dying?”  He replied , “what’s it like to think you are not?”

So I hope that when your time comes when you face the nearness of end of life, you understand the insult of your word ‘anyway’.

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!

Clenched Teeth

“And at the end of the day.. just give them my cell phone number. Please. It is my personal cell phone number, but I understand that a call for hospice information is a call from someone in crisis. I am happy to take that call.”

I do a lot of inservices with case managers, discharge planners, social workers and I end most presentations about hospice information with this statement.  I double down on the statement by distributing my business card - with my cell phone number- to attendees. 

And honestly, most days, even weekends or days when I am out of town, I take calls from unidentified numbers and talk to family members inquiring about hospice care. It is not the most boundaries thing that I do, and it probably serves some codependent need in me, but I think that I can help.

Wednesday this week, I was not officially working. I had fielded several phone calls, however, through the course of the day, while trying to juggle some personal errands. This is where the blurred boundaries get tricky. So at 4:00, when I was in the dentist’s chair, getting my teeth cleaned, I had NO patience for my phone ringing.

“Ignore it,” I said, with suction in my mouth. 

But it rang again. And again. And. AGAIN. No message left in between - just perpetual redialing. My children were not in my presence so I worried someone was in crisis. I couldn’t ignore it, so I jumped out of the chair - paper bib around my neck- and answered.

“This. Is. Jenny!” I said, through clenched teeth, in an unfriendly tone.

“Hello. My name is John Doe and my wife has Alzheimer’s. I have been caring for her by myself for five years but she is ...is…. is… not good… Susie Jones in my support group suggested I call you..”

I am not proud of my response - that was driven by lack of boundaries I had allowed.

“Uh, yeah, HI, John Doe. I am not available to talk right now. I am in an APPOINTMENT. IF you listened to my voicemail, you would have heard the number of our intake desk. I suggest you call them and they can help you.”

“Oh….. um, ok.  It is just that Susie Jones suggested your name and…”

“Great. So you’ll call intake and they will take care of you. Goodbye.”

And back in the dentist’s chair I hopped, indignant from the interruption. Checking the status of one’s teeth is really an insight into one’s health, is it not?

Just about 48 hours after that phone call, I was ringing John Doe’s doorbell. He had, in fact, gone ahead and called intake. He was seriously considering hospice for his wife and an evaluation was deemed appropriate. I am the evaluation nurse, so it was on me to show up at his house at the agreed upon time. As luck would have it, traffic was bad, so I was running late. I called to inform John Doe and he was clearly irritated. I was irritated with this visit. 

When John Doe opened the door, I addressed him properly as Dr. Doe. He asked that I call him John. I apologized for being late. He told me my outfit was “very fashionable”. I softened.

John led me to the living room and I was struck. The carpet showed the clear marks of a removed coffee table. One MILLION times I have bemoaned the ever present glass coffee table in confused patient homes, worried about its potential as a cause of death secondary to a fall. The vacancy of the coffee table in this living room was so striking, I felt a little badly about my previous arrogance and preaching to families that it “has to go!” It leaves a void. An undeniable metaphorical void.

Dr. Doe, or better known as my new friend, John, treated me with heartbreaking chivalry. I noticed his shirt and slacks were clean and well pressed and I thought about the effort that must go into presenting that way.  An 81 year old man who had either had to learn the business end of an iron OR find a way to get to and from a dry cleaner. When he sat on the couch opposite me, he had already laid out beside him a legal pad, a pen, a picture of his spouse from a healthier time, her driver’s license and Medicare card and a brochure about hospice and dementia.

It was more heartbreaking than flowers and well wishes placed at the site of a recent trauma. There was an obvious trauma here in this house. Things had been rearranged because circumstances had been rearranged. 

John proceeded to conduct the interview with formality and I believe he was initially surprised that I had more questions for him than he had for me. As he told me about his wife’s condition, I gathered that she was likely a FAST 6 (incontinent, requiring assistance for all ADLs, barely ambulatory, barely verbal). I also learned that John was doing her care- beautifully, I might add- all by himself, every day, for the last 5 years. I explained hospice, Medicare criteria, private duty care, and services available to John and he took copious notes. I also learned that John’s beloved had been a critical part of developing one of Atlanta’s most beloved landmarks, was a well known horticulturalist, and spoke fluent French.  John  proudly shared her picture from “before”. 

It was then time to see John’s wife who was safely in bed, in a room barren of potential safety risks. I believe I was right about her FAST level. She held my hand and told me she was, “happy” and grabbed my hair to say, “pretty”. I loved her. She was peaceful and kind. She also had no idea who John was, where she was, or that she was soaked with urine. I’m certain that happened while John and I were speaking because all other indicators showed meticulous care. 

This whole thing- story and details- is about what happened when John and I went back upstairs. I was ready to conclude the visit and inform John that I would request records and an order from the doctor and see what we could do to help. I was nonspecific because she seemed borderline. But as I tried to inform John about the next steps and compliment him about the care he provides, he said this:

“It would be nice if you could send some help. Sometimes I speak to her with clenched teeth. I don’t like when I do that. It is hard to be patient because everything she does takes so long. And I don’t know her anymore. But I get frustrated, and I shouldn’t talk to her that way.”

Tears welled in his eyes and dripped on his starched shirt. 

“Well. So. You will be in touch Monday, yes?”

And I assured him I would. I complimented him again for his good care. I reminded him he was human.

He crafted for me the best way to get out of his driveway. And then said thank you.

It took me about 7 K turns to get out of the driveway but I was already in tears on the 4th one. Dear God. Caring for a demented loved one is SO. INCREDIBLY. HARD. Thankless. Merciless. Hard. 

But I wasn’t teared up about that because unfortunately, I see that a lot. I was teared up about John’s shame from speaking through clenched teeth. I was teared up about my own shame from speaking to John through clenched teeth. Patience is a precious commodity, it seems. 

The moral of this story is likely obvious, but I think no less worthy of stating. IF you find yourself speaking through “clenched teeth”- as nurse, as caregiver, as parent, as teacher, as HUMAN- ask for help.  Frustration is an authentic response and not one to be shamed. And remember what Mr. Rogers said, “look for the helpers. Always look for the helpers.”

John. I am sorry. Help is on the way. 

To the dear friends and family attending our hospice patients..

This is a heartfelt letter to the friends of families receiving hospice care.

Dear Ones,

First and foremost, thank you. Thank you for being present with this friend and family who is facing the very scary prospect of end of life care. With your heart and spirit, you have continued to be present with this person in the darkest of hours and we, as hospice providers, appreciate your courage and friendship.  We know from numerous studies that people fear loneliness at end of life so your continued presence and support is both wonderful and necessary.

I/ we have a request, however. We, as hospice providers, believe we are all in this together and we want/ need to be on the same page with the friends and advisors that are in our patients’ ears.

Here’s the thing- we know that talking with a hospice patient/ family is difficult. Their circumstance is overwhelming and our human nature compels us to offer help, to better a situation. The truth is that hospice is hopeful and helpful and wonderful but often times very, very hard. Families are required to provide care they never expected and the grim reality remains that the patient is not going to “get better”. The realities of hospice care with the combined efforts of the hospice team and the family at bedside can be difficult/ harsh/ scary/ exhausting.

At Weinstein Hospice, and any quality hospice provider, there is diligent work done to reduce the stress/ burden on the caregiver. However, the truth about providing care at home is families have some extraordinary responsibilities. Sometimes the personal care that is required seems untenable. And things get very, very hard.

Here’s the thing I/ we need you to know: church friends, neighbors, out of state relatives, etc. If you have entrusted the care of your dying loved one to a quality hospice program, like Weinstein Hospice,  you need to feel confident that the clinical staff is making all the necessary assessments to provide the right level of care.

Unfortunately, very often we get calls from tired and scared family members saying, “So and so told me I should be getting XYZ…” Or, “So and so said when her Uncle was dying, his hospice did, blah, blah, blah, blah…”

We hear you. Those calls penetrate all of us on our team because they let us know there is fear and unrest and there is need for a response.

What those calls don’t necessarily indicate is the Medicare requirement for continuous care or acute GIP.  Those requirements are strict and clear and a proper hospice will not push the limits on those distinctions. We can’t. The financial and regulatory ramifications would be devastating, especially for a small non profit like Weinstein.

But here is what I say to you, interested, devoted, trying to be helpful friends and family.  I understand how hard it is to look at an exhausted caregiver and not offer a brighter alternative. Believe me when I say I have cried in my car more times than I can remember leaving a family terrified, despite the reassurance of the 24hour hospice number.  I know, Cousin Sue, that his wife shouldn’t be changing his diaper. But I also REALLY know the Medicare criteria and I can’t change benefits that don’t exist.

So desperate to help friends and family, please hear me when I say, I know how badly you want to say something helpful. I know that believing hospice should do more for the person you love who seems exhausted feels helpful. I beg of you this: PLEASE do not tell a friend facing end of life care what hospice SHOULD do. IF they don’t have hospice, please encourage them to engage that resource. But if they have hospice in place, it would be most helpful to suggest that they let their team know how difficult things have become to manage.

When trying to be helpful “others” make hospice families believe they are entitled to something they are not getting, without fully understanding the Medicare requirement, they are only disrupting the palliative process.