Trapped In A Nightmare

hospicephysician:

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.

Originally posted on 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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The Secret Lives of Doctors

“Doctors worry about you — a lot. Not in a cowering, you-might-be-a-lawsuit-waiting-to-happen way, but more like in a, “Please, Lord, let them heal well despite the fact that they are diabetic and still smoking a pack a day, and though I know it must be hard for them to quit, I’ve asked them to stop so many times” way, or a “That specimen looks worrisome. I hope it will be fine and that they won’t need more surgery. I wonder how long it will take the pathologist to let me know?” way.”

This was an excerpt taken from a great short piece written by Starla Fitch, MD for the Huffington Post (Link). I think it’s very enlightening to the lay community about how doctors think and live their lives with the patient mostly being central to it. Although I did identify with most of the piece, I felt very drawn to the paragraph I quoted above.

As a hospice and palliative care physician I do worry a lot. I worry that I won’t be able to control your loved ones pain or other symptoms, I worry the agitation may be too severe to control, I worry that my intervention may be sedating even though my intent is just to control the pain, I worry that my prognosis of time may be way off, since you have family coming in from all over the country, even though you’ve reassured me that “I’m not God,” and “no one really knows.” I worry that you might panic and call 911 even though your loved ones wish is to die at home, and lastly I worry that your loved ones death will not be as calm and peaceful as you hope.

Do I worry? Yes I do, but I would choose medicine every single time if I had a chance to do it all over again.

 

Shine On, My Boy

hospicephysician:

Very poetic and real entry about the passing of Jonny. I appreciate the author sharing such an intimate part of her and Jonny’s journey with the world. I’m sorry that I have just now discovered this blog. To Jonny’s girlfriend; please know that you and Jonny have helped and will help others who come across your blog to know they are not alone along their journey. To Jonny; Rest in Peace.

Originally posted on Team Jonny:

And so the inevitable has come.

At around 10 o’clock last night my gorgeous boyfriend of 3 years slipped away and lost his battle with cancer. He was heavily sedated and the nurses assured us he would’ve felt and known nothing. 

But we felt and saw everything. And it was scary. And painful.

As he got closer to the end his body warmed up, his hands became clammy, his pulse started racing in a last bid attempt to fight. His breathing became shallow and laboured, there was fluid in his chest that bubbled through each inhalation. He struggled to breathe for a few minutes and then he was gone.

They say then when someone dies there is a sense of peace, maybe relief, an overwhelming knowing that the person is no longer there. This is true, from the first sharp intake of breath before the struggle, there was no…

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Palliative Care? But I am not dying!

hospicephysician:

Great post by Karen Mulvihill DNP, APRN, ACHPN, FNP,ACHPN, Director of Palliative Care Services at Danbury Hospital in Connecticut. Although some patients may have misconceptions about palliative care, while practicing inpatient palliative care, I found that most patients hadn’t heard of palliative care. To help ease their mind about our teams involvement, I used to reassure them by letting them know they would still be cared for by their physicians and hospital staff. Our team was there to provide additional support (physical/psychological/social/spiritual) during their hospitalization. I would use the analogy of an Ice Cream Sundae. The hospital, the physicians and ancillary staff were the Sundae and we were the cherry on top. Whether the cherry is added or not, the sundae is the same. Adding the cherry makes the sundae that much sweeter.

Originally posted on Engaging The Patient:

Mulvihill

Karen Mulvihill

Guest Contributor: Karen Mulvihill DNP, APRN, ACHPN, FNP,ACHPN – Director of Palliative Care Services, Danbury Hospital

Palliative care has a bad rap and is often underutilized because of the lack of understanding of what it is. Patients panic when they hear “palliative care” and think it means they are dying. But palliative isn’t only for people who are terminally ill, and it is not the same as hospice care. This is a daily discussion I have with patients and families dealing with a chronic life-limiting illness. The first discussion usually centers around why palliative care is not hospice. Palliative care should be part of the treatment plan from the time of diagnosis of an illness through end of life and hospice care. That may be years in some cases!

Palliative care is for ANY patient with a chronic illness who is experiencing a decreased quality of life because…

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Love Locked

Originally posted on 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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At The Bedside

Originally posted on Team Jonny:

I feel such an overwhelming sense of love when I look at my baby boy asleep in the hospice bed.
He’s thinner, his bones stick out, his face is sallow, his eyes heavy and black, but my gosh is that boy still gorgeous to me.

He’s still the most handsome man I’ve laid eyes on. His strength, bravery and positivity still radiate from him in a glow of warmth that fills the room.

A warmth I know will soon be gone. The flame of hope extinguished by the storms of death and replaced by a bitter cold that will consume everything.

They added a 3rd syringe driver yesterday. A permanent tube into his arms and leg, via a stat line, where a syringe can pump a constant measured amount of drugs into his body. This one will pump constant sedation and keep him asleep until he slips away.

At least that’s…

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Change

This is the last post from HPMFellow as a Hospice and Palliative Medicine Fellow. I’m proud to now call her a colleague and I look forward to working with her in the field. I hope she will continue to share her experiences, thoughts and insights. Thank you HPMFellow and good luck!
-Hospice Physician

By: HPMFellow

I graduate “24th grade” tomorrow.

I’d like to use this reflection to come to terms with the “end” of my formal professional training – more specifically the most recent part. This past year as a palliative medicine fellow, and the past several years as a mother have done a great deal for my personal growth. My daughter and my patients have taught me – simply by living the first and last days of their lives – that without an element of change to every day time tends to stand still. I’ve learned that the passage of time and the preciousness of life is truly something worth celebrating.

I used to call my daughter my personal barometer for professional growth as we both started medical residency together – she a rent-free occupant of my uterus, and me a nine-months pregnant deer-in-headlights intern. She was a helpless infant when I took my first overnight call in the hospital. She started talking (and hasn’t stopped,) about the time I started teaching other residents. She learned to walk about the same time I placed my first central line unsupervised. And when I started my palliative medicine fellowship she started throwing tantrums. I began to notice how very similar she was to some of my patients and their families. The similarities didn’t stop at the tantrums thrown in resistance to change, but also in the wonder of life that comes with youth and being forced to slow down.

A month ago my daughter began to learn what death means. She had used the word before, but usually in respect to a character in a movie, or great-grandparents she hadn’t had the opportunity to meet. But last month our beloved dog died. When we came home from the vet, my husband and I struggled to find the words to explain something so permanent, and how to ease the acceptance of a change so big in her life.

We decided to tell her “Zoe” had turned into a star. Not a lie in our minds – she was physically now reduced to a lifeless carbon –based dust. The stuff that the late astrophysicist, Carl Sagan, often referred to as “starstuff.” This idea resonates strongly with our beliefs, and we felt that giving our daughter a star in the sky to look up at and think of her dog would also be kind.

So we told her Zoe had died and become a star.

“Why?” her current favorite word.

“Because she was very, very sick and very old.”

“But where is she?”

I pointed to a bright star in the sky, “There.”

She looked up at the star and began to cry, “I want her to come down from there.”

“I’m so sorry sweetie. I miss her, too. But that’s where she’ll stay from now on. But she loves you, and she’s not sick anymore.”

She composed herself surprisingly quickly. Then she looked back at the stars.

“When I die will I become a star?”

I wasn’t prepared for that. But she was right. My daughter is mortal, too. “Yes,” was all I could offer.

Then in true magical-thinking she decided, “When I die I want to be the moon.”

And just like that my learner became my teacher. Like I’ve learned this year to allow my daughter to teach me, I’ve allowed myself growth from my patients. In general I’ve found that those closer to the hour of their life’s end often have significant lessons to share if those around them are listening and observing.

If I could again see the faces of those I’ve cared for this past year who have since returned to starstuff, I’d like to give them another heartfelt “thank-you.” For the profound appreciation of change you’ve taught me and the philosophy of whole-person medicine I hope to carry moving forward.