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.

Healing the Healer

By: HPMFellow

I’ve had the honor of serving many fascinating individuals with life-limiting illnesses. I’ve considered them some of the best teachers I’ve ever had in the nuances of medicine and life. Treating patients who come from the medical community is a particularly unique experience for me.

I’ve tried to pinpoint why it feels different – it could be the mild anxiety that someone well-versed in my field may detect my deficits. Or – conversely – maybe it’s that I’ll make too many assumptions about what another medical professional may understand about their illness, and miss an opportunity to educate. Mostly I think it’s the recognition that those who heal succumb to the very same illnesses they attempt to heal in others.

Recently, I treated a former mentor in our hospital’s palliative ambulatory clinic. I reviewed her medical data first – “Recurrent metastatic intestinal cancer, declines further chemotherapy. Please assess for symptom management.” I studied the regimens she had previously been on, her recent scans, tried to guess which symptoms exactly I’d be assessing. Then I reviewed her demographics to get a feel for educational level, and felt that chill that comes with familiarity. She was an employee at my health center. Finally I looked at the place where I should have started – her name. A familiar one. This woman was responsible for most everything I know about the delivery of obstetric health – both in my training and personal experience. I felt crushed. I let my supervising attending know I felt this way. I still wanted to participate in her care if she didn’t feel uncomfortable with the dynamics of our new roles. I knew from prior experience that she’s a humble woman, but perhaps she may feel the need to protect the privacy of her condition. He went to ask her permission first.

My mentor graciously allowed me to assist in her palliative management. To my pleasant surprise – I felt like her doctor. I know I am. But I felt like I was. I had assumed I’d still feel like her student or patient. But that role faded away, and it felt very natural to speak openly to her about her care in an empathetic and professional manner. Could this be the developing confidence and competence I’ve been working all year on?

Later that evening, however, as if some higher part of my brain knew that it was safe to let my guard down – I did. And I was crushed again – though years had separated us from our former roles, I knew I’d be losing a teacher soon, and that still affected me.

I reflected on my past experience losing a mentor of mine from medical school. We had assumed she was unsinkable because she was in her field – a self-proclaimed “Trauma Mama” of the ER. Even when she had told us her cancer had metastasized, she hadn’t slowed down – continuing to mentor students, and in fact dabbling in her own palliative medicine training. Burning brighter and brighter until her eventual end on earth.

A passage from one of my favorite books – an Arthurian metaphor for life – brought me comfort when I lost this former teacher. It reads:

“I wanted to give you a parting gift, and I could think of nothing better than this.” He pointed to the road beneath their feet…“Roads are the sign of the wizard. Or did you know that?”

“No.”

“Then remember what I say. A wizard is one who teaches by walking away, and when you can walk away yourself, you will be a wizard…. I see you don’t quite believe me,” Merlin said. “But walking away from me really is the greatest gift I can bestow upon you.”

…The very image of Merlin faded from his mind, until only a lingering voice remained, saying, “I have led you to the secret places of your soul, now you must find them again, this time by yourself.” In a moment this voice too faded away. The boy passed the bend, kicked up a puff of dust, and smiled. He suddenly knew that every time he saw a road he would think of Merlin.

My patient and current teacher emailed me later to say “It was comforting to see a familiar face.”

It was comforting for me as well.

Compassion Fatigue

By: HPMFellow

“I’m happy to see that he’s stabilized for now, but it’s also a good time to revisit your family’s goals for Brian for when another episode like this happens again.”
Brian’s father’s eyes widen, he whispers, and he motions for me and his wife to join him in the adjoining living room.

Here we go again.

I lean in to speak to Brian, my 21 year old patient who’s been living – some may call it anyway – with advanced Lou Gehrig’s Disease for the better part of his adolescence. I let him know that I’d be back to examine him shortly. I’m certain he’s been “locked in” for quite some time, but I have no idea how much he actually hears me. I’ve tried to speak openly in front of him before, but out of respect for those who’ve known him all his life the serious conversations are always deferred to the living room space as they feel heavy topics may upset him. The patient’s corner is solely reserved for speaking about urine, ventilator settings, and g-tube residuals.

What every 21 year old wants to hear about. Poor guy.

I sit down with Brian’s parents. “We’ve been thinking about the code status again, and talking it over. We definitely don’t want him to have his ribs broken – we know he’s broken bones just moving before. I know we said change it to ‘DNR’ last time, but I think we’re going to leave him ‘full code’ for now.”

Dig deep for that patience. It’s not necessarily two steps back. They’re not the most difficult family on your census – cut them some slack.

“What made you change your mind?”

The father begins, “Brian’s mother asked him …”

Is she kidding herself? He doesn’t move, he doesn’t even blink his eyes! They may be agreeable, but they’re certainly some of the worst cases of denial I’ve ever seen.

“… and he expressed wanting to try. Maybe it’s not what we want for him, but we want to respect his wishes .”

Sincere. Delusional, but sincere.

“I know it’s a difficult decision. I don’t want to push you one way or the other. If you feel Brian and your family is not ready to make a change in his long-term plans, we can revisit that at a later time-“

The vibrator on my work phone goes off. I lean over to silence the ringer.

It’s probably not an emergency.

“I’m sorry. I just want to stress to you the importance of what I’m sure we’ve spoken about already. Though we’re not sure if X would survive a cardiac arrest, we do know that he would more than likely not be the same neurologically should he survive. His body has been through too much.”

“We know.”

The vibrator on my phone goes off again. I quickly silence it.

If this nurse doesn’t stop calling me I’ll never get through this!

I start again, “If you believe he knows then I would agree with your choice to respect his wishes, but if you’re not certain that he knows that, or think that he wouldn’t want that, then I would encourage you to make a decision about change sooner than later.”

Brian’s father speaks to his spouse in Japanese. There’s a heavy silence. She responds back in Japanese. Some more silence.

I sneak a peek down at my watch when they’ve looked away. I’ve already spent more time than I had planned here, but I don’t want to look like I have.

Am I giving too much of myself to my patients? Will there be any leftover for my kid?

Am I a good wife?

“I’m so sorry your family is going through this difficult process,” I add.
The parents nod. Then more discussion in Japanese. More silence.

I hope my Mom is okay. I should call her.

I don’t speak Japanese, but I notice the parents’ tone changes. Even the silence changes. The mother is nodding, holding the father’s hand.

They’re tired.

I look over at Brian – lying motionless in his hospital bed, eyes fixed ahead at the ceiling. His silence is heavy, too.

He must be tired, too.

Or is it projection? When was my last vacation?

The silence breaks. Brian’s father speaks –

“We think that Brian would still want to remain full code even if he knew he wouldn’t be the same.”

I’m tired.