Killing Cancer

I’m an assistant clinical faculty member at a local university which trains nurse practitioner (NP) students. For me, the next greatest thing to providing patients with Palliative Care, is to teach it. I enjoy teaching immensely and when the NP students rotate with me it’s great to see their growth over a 10 week period. As part of their grade to pass, they must do a reflection project. Although “project” may seem involved, I leave it up to the student to decide what they are going to do. I give them some examples of students who did it during my fellowship, which included poems, photography, water painting, playing an instrument, interpretive dance etc. The only criteria is that it reflects or ties in to what they have learned through the rotation. The following essay was written by one of my students and she gave me permission to post it here.

Killing Cancer

I think “end of life” first registered when I was 9 years old.. I found a copy of Kubler Ross’s On death and Dying in my home. Probably present because of my father’s exposure to his own father’s untimely death at 50 years old. and I preceded to weep on the front porch where my parents found me. “No, Darla, no one is dying.”

The youngest of four. I was really a “Daddy’s Little Girl”. And I think as my parent’s lives and marriage got better, I became their love child that got to explore a better time with them. But shortly after my 12th birthday, in January, 1985, a weekend get-away with my parents was cancelled. Something about dad having headaches and having to go to the hospital.   When my father called from the hospital to tell me the news that our trip was cancelled, I am pretty sure I was enraged and no idea what was in store.

My brother came home that night and said “Don’t worry, Darla, he just has headaches.” The next morning was different. My mother sat me on her lap and told me that “Dad was going to die; he has a brain tumor.” If it wasn’t so sad it would be hysterical. There was no hope, no prayers. Just that. He is going to die. Period.

I got every stuffed animal and poster off my wall to bring to his “bright eyes” at the Mass General Hospital. My mother said his eyes were bright because of the high doses of steroids given to relieve pressure on his brain. They did the craniotomy on January 13: his glial blastoma was too entwined in his brain they told me. It was too twisted together. It was like two hands wrapped together. This tumor resembled his namesake, his own father’s brain cancer. Just a different area of the brain and more aggressive.

They told us he had 9 months to live. Did he and my mother discuss ‘goals of care’? I guess. They made the decision for him to Die at home. This apparently not well-supported by my father’s family. His children, us, watching his last hours and days of life.

At month 8, I went to a friend’s house for a sleepover during which time he declined so rapidly that when I returned that weekend, he was in a wheelchair and was nonverbal.

Once confined to bed, I used to lie in his adjustable bed with him, much like my own children lie with me. And I remember how he smiled when the around-the-clock private duty nurse said, “Look Barney your daughter Darla is here. She is helping to turn you…” I remember those bright eyes shining when he would see Redd Foxx on the TV. It was so innocent and beautiful.

Family came and went. Hurricane Gloria blew into town late September, 1985 and I danced and danced and danced in the wind.

I remember his breathing became shallow and slow. And looked like it might stop. And then it would just start again.   My mother says now that he died Christ-like, saintly. She said he died free from sin. He was just skin and bone.

And at 9 months on October 1st, just as the doctors told us, he died. In our dining room, in an adjustable bed. Holding the precious hands of his namesake, my brother. the only one that was his by his side. He took his final breath.

I awoke to my mother crying and she told me he was gone and I jumped on his adjustable bed and hugged his lifeless body.

My mother, a nurse, said she didn’t sleep for a year. Having to sleep in a day bed close to his adjustable bed for fear that he might get up and fall.

Ironically, hospice, wasn’t popular my mother said. My father missed the Hospice Medicare benefit by one year.

And he also missed Duke University killing Brain Cancer with Polio by 31 years.

I know why it is so important I tell you this story. Because nobody talked about him after he died. I mean nobody. It was too painful for my mother and my older siblings were kind of tuned out. My family kind of fractured after he died. And we have been trying to put it back together ever since.

My siblings and I, we became survivors. In a unique club.

Why is it important that I tell you this? Because life has supported my healing and I have found purpose. I guess a 12-year old doesn’t understand the finality of life. Adults might. There are no videos, no tape recordings of him. Few pictures.

And it shaped me, it led me to be here.

But I found that just like someone who has breast cancer gets involved in the fight. I am getting involved in the fight to support people who are dying that happen to be living. Because maybe if we just start talking about dying, we really won’t miss living.

My dad missed a lot. He missed his son-in-law’s. And you know he really got cheated. He told me he really only had children to have grand-children. And he really missed out on that. But now I get to see his “bright eyes” in my children’s eyes. And I do. And I am so happy that happened. And I am really happy that this happened (rotation in Palliative Care). And I got to be here. Because it is very important. And I tell my children that all the time.

-NP Student

 

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Trapped In A Nightmare

In this post from the blog Team Jonny, it’s been a week since Jonny died and Jonny’s girlfriend (JGF) writes about her grief. I highly recommend this blog to everyone, especially to those who may be experiencing grief. She’s written several entries after Jonny’s death and she is an open book expressing her raw emotions and feelings. I think most people don’t know how they’re supposed to feel after the passing of a loved one, however, I think learning about the feelings of others in the same situation can help them through the process. By reblogging her entry I hope this will touch and help at least one person who is grieving. Thank you JGF for continuing to share such an intimate piece of your life with us.

Team Jonny

It’s been a week now.
I genuinely don’t know how I’ve done it.
It still feels as raw as it did on the day and, if it’s possible, I miss Jonny more each morning I wake up without him.

I am completely uninterested in a life that doesn’t include Jonny Walker.

Don’t worry, I’m not suicidal! If anything I want to live more than ever before; why would I take my own life when there are people like Jonny who don’t have a choice?

There are people out there who are literally dying to be alive.

No one should ever abuse the gift of existence; it’s a cliché but it’s never been more prevalent to live everyday like it’s you’re last.
Especially for me; I’m going to travel the world. I’m going to work hard. I’m going to follow my dreams and jump into a career that brings me happiness. I’m going…

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Love Locked

Team Jonny

I’m going to write about the past. 
Jonny is very near the end and today is not the day to delve into how that makes me feel. He has not woken up for over 15 hours and when the time comes, he will go. And it will be right. And we’ll be okay. I think.

At the beginning of this year Jonny took me to Paris because I’d never been abroad. After a tricky few months of singledom it was an attempt on his part to win me back. It took me a very long time to decide to go; I thought at the very least I owed him closure on such an intense chapter of our lives.

The whole day was beautiful, we took the Eurostar there and back, running from tourist attraction to tourist attraction in a bid to do ALL OF PARIS in a 10 hour period.

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The Ugly

Written by: HPMFellow

The good and the bad. I had seen both sides of death before considering a career in helping people live and die better. The love of a family that comes together to make their loved one’s passage a smooth journey. The unfortunate wedge of unresolved transgressions that can tear another family apart when emotions are running high. But the good and the opportunity to do good has always outshone the bad for me in this field as I like to think it has in life.

But sometimes I forget that even when everything is done right in a situation made to ease one’s passage surrounded by love and goodness, a natural death can still be ugly.  It’s the exception to the rule, but it doesn’t make picking up the pieces any easier.

He had just turned 39 years old. The week before he had been considering further chemotherapy for an aggressive neuroendocrine tumor that had just been discovered 6 months prior. He decided along with his oncologist that he first needed some time to recover his energy and optimize his symptoms before undergoing more aggressive therapy, and it was then that he had enrolled into our home palliative program. Within a day his wife had called his oncologist to discuss his rapid decline. They decided hospice may be the best option now.

I met this man four days ago after a weekend of accelerated physical decline. As I entered his modest apartment with my attending the first thing I noticed was his gaunt 39-year old body shifting back and forth uncomfortably from a sitting position to lying down on the mattress in his living room. The next thing I noticed was an open door down the hallway – decorated cheerfully in green and purple for what I assumed was a young girl.

“Turn it off, now,”  I thought to myself, tucking away any thoughts of my own daughter. “Turn that off, and turn on what he needs.”

I crouched down and had a conversation with the man and his family. He was experiencing terminal agitation, and had increasing pain. We gave him some more Ativan, some more morphine, and some ice chips to wet his lips. He was lucid despite it all. Joked, “I’ve seen better days” in response to the worn, “how are you feeling?” I knew I had to be careful with my words – not just because these would likely be his last hours, but also because I knew his wife would probably replay the day in her mind for weeks, and maybe even years to come.

I glanced at the man’s bright pink POLST form  – “full code,” selected across the top, signed just three days prior. I waited until his breathing became a little more regular, and he paused to open his eyes again. At a loss for words I tried the truth. “I want to ask you an important question. I understand it was your hope to become stronger to get more chemotherapy, but unfortunately your body has become too weak.“

“Is this the end?”

His wife turned her head in an attempt to hide her tears.

“It’s the beginning of the end, yes. You’re dying. You have told nurses and doctors before that should your heart stop beating, and you die that you’d like us to try to bring you back to life even if that means there’s no guarantee that it would work, and understanding that we might hurt you. Your body has changed so quickly, and I know it’s impossible to think about, but it’s more vital now than ever. I must ask – is this still what you want?”

He closed his eyes again, “Yes. Do it.” This time his wife didn’t hide her face. She asked, “Honey. Are you sure you want to die like that? In the hospital? Away from me?”

He closed his eyes again. Then slowly, “No. I don’t want that. Just let me go. Just make me comfortable.”

His wife nodded and sobbed again.

“What – besides comfort – is the most important thing to you right now?” I attempted.

“Just my family. And my friends.”

I excused myself to the next room over to give them some time together. I heard her call a couple of close friends. His parents were on their way from Arizona. We spoke to his mother-in-law who had been there to support her daughter. She told us how she had lost her spouse as well. She relayed that her daughter had just quit nursing school to be with her son-in-law during his illness. She told us the man’s daughter – just three years old – was staying with her the past few days. “How do you tell a three-year-old her father has died?”

Before I could manage a humble response her shouts filled the silence – “Is this normal? Doctor!”

The ugly. He had turned on his side and vomited profuse amounts of old blood. The life was leaving his eyes. My attending comforted his wife, and I held him steady as he took several last agonal breaths.

“Is he gone? My love! I love you. I love you.”

He died. We offered to clean the body of the man. His mother-in-law provided towels while she continued to comfort her daughter. One of the towels I used to sop up the coffee-ground blood was a toddler’s hooded towel – pink and cat-shaped. I placed it in a trash bag with the rest of the soiled bedding. Part of me wanted to try to get the marks out of the child’s towel, knowing she’d ask for it later. But I thought if the stain couldn’t lift it would be painful for both daughter and widow. It was too late to erase this memory for her. But maybe I could eliminate some reminders.

After leaving his residence I didn’t cry – atypical for me. Just reflected for a long time before driving off in my car. The breeze felt softer when I rolled down my window.  The sun’s warmth retained on my driving wheel felt kind. I watched a kid walking with his father across the street – cheerful and seemingly untroubled. An almost cruel juxtaposition to the events I had just beheld in another’s life.

At the least – I hoped that not being alone at the end gave this man and his family some degree of comfort. And I reflected on how precious is life. And how beautiful. And how ugly. And good. And unfair. All at once.

Saying Goodbye

By: HPMFellow

Patient “turnover” is pretty high in hospice work. It comes with the territory of serving a patient panel with a limited prognosis. When a patient quickly comes and goes off our service and I’m made aware of their death, my usual response is either irrationally impractical (“but I was going to see them tomorrow!,”) or slightly sentimental (“I wish I had more time to know them better.”)

It’s not the way with every patient and family I’ve met – I’ve had some rewarding longitudinal experiences which have felt “complete” for lack of a better word. I get the opportunity to help and see a person become more physically and emotionally comfortable before their final departure, and I get to meet with them more than once. However, even during these more whole patient experiences I’ve only had the chance to say “good-bye” once.  A real good-bye.

I had heard rumors from my patient’s social worker and RN case manager that morning that he was planning to move back to Peru to live his final days. He and his family recognized he was approaching his final weeks of life. The disposition plan was to supply him with enough medications for last him through his last month of life.

As I wrote out my patient’s prescriptions I started reciting my standardized closing routine of the home visit out loud: “Please don’t hesitate your RN case manager if there’s any changes or questions, use our 24-hour triage line at any time of day -”

And then I stopped at the part where I schedule my next visit or throw in the well-intentioned but trite, “take care.” There would be no next visit. This was the closing send-off.

I hadn’t prepared any words – any closing statement that alluded to the future seemed awkward. I could see in his eyes that he knew what was coming next. I was suddenly overcome with emotion as I looked at my dying patient’s face and realized out loud, “this will be my last visit with you.” It was the last time I’d see him alive. “It was an honor to serve you.”

What came next was also unexpected – happy tears and hugs. But it made sense! Yes, mortality was just acknowledged out loud, but the next leg of the journey would be one of returning to a place this man knew as his home in this life.

The family asked me to join them for a group photo, and I did wind up telling them to “take care” of themselves and each other in the end.

I have the terrible habit of “chart stalking” patients in our EMR system long after my responsibilities to their care have ended. I discovered my patient died within two weeks of our final farewell.

I don’t know if I’ll ever again experience a parting as beautiful as that one – I’m happy that I get to remember my patient as an alert and talkative man with smiling eyes.  But I do take pause with every patient good-bye now. It may not be the last, but I realize it still has the ability to be meaningful if I just recognize the potential.

Sorry, I Don’t Recognize Your Name

Here I sit at the end of hospice IDT (interdisciplinary team) meeting with a sense of sadness. I feel compelled to write this entry. We have just reviewed and had a quiet moment for all the patients who have died in the last week. The list is long as usual but what saddens me the most is there are names on this list that I’ve never heard before. To be the Medical Director of a hospice and to not recognize a name is a tragedy. If this only happened once in a while it wouldn’t be so sad but it happens every week without fail. Why does this happen? It happens because so many patients and families don’t know about the benefits of hospice care. They don’t realize that hospice is about LIVING not dying. It’s about living the rest of your life on your terms, living your life with as much quality as possible, it’s about allowing your family to participate in a part of your life that will unfold no matter what we do. If you couple the above with physicians avoiding conversations related to End-of-Life Care, you get patients referred to hospice in the last hours and days of their life. I look at these names and feel regret for the patients and families as I think how much help our hospice team could have been physically, spiritually, psychologically and socially if we’d been involved during the last six months of their life. Next week I’ll have to start my apologies all over again to a list of names I’ve never seen before. “Sorry, I don’t recognize your name” I’ll be muttering under my breath as I go down the list and read the names one by one.

Take a Deep Breath and Go Home

There are many times after a family meeting when I have to take a deep breath and remember that I’m leaving this patient and family and going home to my family. I’m sure we all feel at times that families make decisions for their loved ones that we don’t agree with as palliative care professionals. I have to remind myself that families I often meet with will make decisions that they will live with the rest of their lives. In the future I may remember this patient or that situation but my personal life most likely will not be affected by the decisions of others. This is the reason at times we have to take a deep breath, take a step back and let others live their lives as they see fit. I decided to write this because I most recently did a palliative care consult for an unfortunate male in the ICU. The patient has a history of CHF, liver cirrhosis, renal failure and a long list of other problems. He recently began to physically decline with decreased appetite, weight loss, decreased mentation, hypotension and hypoxia. After several discussions with the physicians, the wife did make him a DNR with pressors since he was already on pressors. He currently has a poor prognosis and all physicians including consultants are documenting “poor prognosis.” Knowing that this patient will get worse during this hospitalization, we held a family meeting to discuss the “Goals of Care.” To make a long story short, the wife decided that she wanted everything done, short of CPR and intubation, because when he dies she wanted to make sure that “I did everything.” We tried to reassure her that when a patient is dying MANY THINGS CAN BE DONE to assure that he is comfortable. We also tried to reassure her that there are ways she can be involved at the bedside while he is dying. Despite our explanations of possible discomfort at the end-of-life with continued agressive treatment, and despite our explanations that continued aggressive treatments would serve only to prolong the moment of death, she continued to voice that she wanted “everything.” Unfortunately we see this quite often as the role of medical decisions and expertise has been given to the families by the physicians. Physicians often say they don’t want to be sued and therefore will present the family with a menu of options and the families can pick and choose what they want. This is why we will see an order such as “Yes CPR, No Intubation,” or “Yes ACLS drugs, No CPR.” Often times the nurses will see me take a deep breath as I walk out of the ICU while shaking my head. I then remind myself that people have to live with their decisions in the context of their culture, religion and understanding of life. I may not agree with it, but I have to remind myself that it’s not my life. I then smile as I drive home knowing that my family is waiting for me at home.