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.

Congrats HPMFellow

I just wanted to congratulate HPMFellow who, as of 7/1/14, is no longer a fellow but now a full fledged hospice and palliative care attending. As I mentioned in the past, I had the honor and privilege of being her hospice and palliative care mentor for 6 weeks while she was still a medical student. It was amazing to see her growth in our field within the 6 week rotation and at that time she was sure hospice and palliative medicine was for her. She’s an amazing person and showed me that she could be a great physician. I’m very proud and again just want to congratulate her. She has 4 more journal entries that I will be publishing under HPMFellow, however, if she continues to contribute, maybe she’ll change it to HPMattending or something :-).

 

The Beauty Bus

I wanted to write this post to highlight a great organization I have partnered with to enhance the quality of life of those I’ve cared for with chronic or terminal illnesses. When I was doing hospice full time, not by chance, one of our social workers found out about the Beauty Bus. Because of the great work the caring women of the Beauty Bus provide, we would receive great feed back from our patients. It became humorous when during our interdisciplinary team meetings, it would come time to have the social worker’s input as to possible interventions, we’d all say in unison, “we know, The Beauty Bus!” I personally want to thank The Beauty Bus Foundation for the great work they do. I personally have witnessed how they truly increase the quality of life of every person they touch. Please read more about them below and support them by donating your money or time, sharing their information with others or becoming inspired to do the same in your community. 

About

The Beauty Bus Foundation was founded in loving memory of Melissa Marantz Nealy who passed away the age of 28 from a degenerative neuromuscular disease. Melissa loved a good day at the spa. When her ability to leave the home became compromised, Co-Founder Alicia Marantz Liotta, Melissa’s cousin, was able to schedule in-home beauty services through her connections within the beauty industry. Witnessing the hope, happiness and respite these services brought to Melissa, Alicia and Co-Founder Wend y Marantz Levine, Melissa’s sister, were inspired to launch Beauty Bus Foundation. 

Mission

Beauty Bus Foundation delivers dignity, hope and respite to chronically or terminally ill men, women and children and their caregivers through beauty and grooming services and pampering products.

Beauty Bus accomplishes our mission through:

  • In-Home Beauty and Grooming Services:  Beauty Bus’ core program provides in-home beauty and grooming services, free of charge, to patients whose illness or condition prevents them from accessing a salon or spa and their caregivers.
  • Pop-Up Salons:  Beauty Bus creates Pop-Up Salons where patients and caregivers receive a variety of complimentary beauty and grooming services in a setting that promotes support and serenity.
  • Bag of Beauty Program: Beauty Bus gives complimentary Bags of Beauty filled with pampering products to remind patients and caregivers that they deserve to look and feel beautiful.

 Here is an experience of a Beauty Bus volunteer:

“I wish you could have been with me on my Beauty Bus visit yesterday. Then you would understand why I volunteer for this organization and how it always touches my heart.

The client is fairly young to have to experience the health issues she is dealing with. She’s had a stroke, has extremely limited motor functions, and during our visit she was unable to talk. But talking for her was unnecessary. Her face said it all.

She is beautiful! But after her facial, her face glowed and she looked so radiant. I offered her my little pocket mirror so she could see herself and how beautiful she was. We held the mirror together as she smiled and just stared. She continued to stare for a good 5 to 10 minutes until we had to take it away so she could get into bed. As she looked at her reflection, I could see the joy radiating from her eyes and her smile never left her. She smiled through the entire visit. It warmed my heart and touched my soul.

When the professional and I went to say good-bye, surprisingly, she reached for the professional’s hand (which was not easy for her), grabbed it and held it for several minutes as if she didn’t want to let Lynette go. And that smile never faded. I’m wondering if she is still smiling. This touched me so deeply that even now I sit here typing this with tears threatening to cloud my vision.

This is why I volunteer for this amazing organization. To experience the simple pleasures we so often take for granted, and watch in another’s face the precious gift just given. Beauty Bus brings dignity, beauty, joy, some pampering and the gift of knowing they are special.

I love my volunteer work!”

 

The Beauty Bus Foundation Information:

2716 Ocean Park Blvd., Suite 1062

Santa Monica, CA 90405

Phone: (310) 392-0900

Fax: (310) 392-0907

Website: http://beautybus.org

Email: beauty@beautybus.org

Twitter: @beautybus

Facebook: http://www.facebook.com/beautybus

 

Chaos, cancer, family, and love: The value in just showing up

Great article by blogger Ann Brasco (Twitter @annbrasco). A powerful paragraph in her entry which stood out to me reads, “Maybe its about less doing and more just being present. In a world that pushes us to fix, cure, act and immediately alleviate, the value of just being present is often overlooked.” Early in my Family Medicine career and while contemplating doing a fellowship in Hospice and Pallative Medicine a chaplain took me on a visit and taught me the value of just being “present.” Sometimes two souls sharing the same space, the same air, the same warmth is more meaningful than we’ll ever know.

Chaos, cancer, family, and love: The value in just showing up

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.