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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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.

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.

Rapport Report

By: HPMFellow

Few things feel better than making a genuine connection with another human being.

In the palliative world you have the opportunity to do this quite frequently. I don’t forget that I’m in that place of privilege. But every so often the rapport you establish with a patient or their loved one can backfire when someone is experiencing grief in an unhealthy manner.  It’s times like these that having a handle on good self-care and setting emotional boundaries may provide relief from burn-out.

A recent encounter I experienced with one of my home palliative patient’s daughters has left me in a reflective state about the risks and benefits of establishing good rapport. When I met this patient and her family it was clear to me from the onset that my patient had reached a comfortable place of acceptance with her advanced disease, and that most of my palliative energy during home visits would be expended on helping guide the primary caregiver through this challenging journey with her mother.

I must admit – there were certain identifiable characteristics of this woman who I believe allowed me to particularly amplify empathy to her. She was a woman who obviously cared deeply for her mother, a woman who was self-sacrificing, and a woman who was openly self-deprecating in her neurotic tendencies. This woman reminded me of my own mother. My mom was the primary caregiver for her dying grandmother several years ago and I witnessed first-hand how her deep engrossment in my grandmother’s care affected her relationships with siblings, her family life, and at last her own health.

The day I met this daughter I recognized that she had already felt these pangs – “I just got into a fight with my brother – I know I shouldn’t have done that in front of Mom,” “I’m running late to pick up my kid from the dentist,” “Oh, that must be the plumber at the front door.”  After meeting with her and the patient together, I asked how she was taking care of herself. “Not at all” was her honest reply. I said something to the effect of minding her self-care, and she genuinely expressed gratitude for this recognition. I walked away from the house feeling like I had just had ended a Friday with a “good encounter.”

I guess I forgot to recall that people with anxious propensities can ride a tumultuous course of feelings. It should not have come as a surprise then that I may be the target of her next emotional tide when I called to check in the next week. A seemingly benign, “How are you doing?” was returned with the following exchange:

“Not good. Yunno, doctor – those medications you stopped last week, I should have never stopped them. I shouldn’t have listened to you. I took my mom to see the cardiologist today, and he’s livid. My mom’s blood pressure is up, and she might have a blood clot in her arm!”

“A blot clot? I don’t believe we stopped any blood thinners. I’m sorry to he-“

“No, it’s more than I’m sorry. I have to go!”

Crushingly perplexed, and a bit wounded I quickly reviewed my patient’s electronic chart. After all – I’m still a physician learner – maybe I had a horrible mistake. The chart confirmed that I had discontinued an antidepressant the patient felt wasn’t helping her, a bisphosphonate, and a statin. Though this patient had a life expectancy of less than 6 months and wouldn’t immediately benefit from these medications, I had checked with an attending and the now alleged livid cardiologist prior to stopping them.  I left a message with this specialist who denied being upset. The patient didn’t have a blood clot. Knowing that what I had done medically hadn’t caused the patient or her family any physical harm I next reviewed in my head what I might have said differently to provide anticipatory relief from panic. You might imagine that exercise was futile.

That day I spent some extra time re-centering my focus before getting in the car to my next destination. I couldn’t immediately pinpoint what had jolted me so, but I’m happy to say I was self-aware enough not to trust myself behind a wheel without a time-out and a latte.

What I have taken away from this experience is not that I shouldn’t allow these human connections to occur (it’s one of the hugest perks of the field,) but to not let them influence my expectations of human behavior.  It’s surprisingly easy for me to forget that the emotions and actions of those I encounter are unbridled and subject to rapid transformation, particularly when it comes to topics of life and death, particularly in the home setting. I think one of the biggest adjustments in transitioning from a family doctor in a clinic setting to a palliativist in the field is not the expectation that my patients won’t experience transformation, but I won’t observe it happen over a course of many years. The concentrated dose of emotions is as frustrating as it is rewarding.

My next telephone exchange with the daughter also happened to be during a moment of crisis, but her tone had changed to one of calm and gratitude. I didn’t let the prior exchange sour my satisfaction of being of service, but I also suspect that she’ll not always be so composed in the future. And it will probably have nothing to do with my medical skill or rapport, but because she is human and try as we may, we can’t prevent or anticipate all sorrow.

As I continue to reflect on my professional relationship with this daughter, I recall some advice from a mentor I once had thought was callous – to paraphrase, he told me that at the end of day the patient’s problem/illness is their own, not yours. I’ve come to realize that the wisdom of these words does not come in cautioning against connecting with other humans, but in recognizing that you enter and leave their lives for only a brief second, and that your opportunity to connect is meant to provide guidance, not ownership of their feelings or actions.

How Do You Want To Live?

“She said she wants everything done,” “really?” I respond while walking into the patients room and not quite sure what is happening. I’ve been called in to see an 87 y/o female with end stage pancreatic cancer and to discuss “goals of care.” The patient has voiced to the physician that she doesn’t want her life prolonged by artificial measures but the daughter about flipped out upon hearing this. After much discussion and drama the patient concedes to follow her daughter’s wishes rather than follow her wishes for herself. “No one has asked my mom directly, so I asked her, ‘do you want to live or die?’ She said she wanted to live.”

From my experience most people don’t want to die. I take care of hospice patients and they don’t sign up with the thought of “I’m on hospice because I want to die.” In fact many of my patients are on hospice because they want to have as much quality of life as possible through the unavoidable journey of death. Do they want to die? Of course not, however they know they don’t have a choice and they’ve come to grips with this hard reality. Even my geriatrics patients have another generation to live for. There will always be a birthday, anniversary, childbirth, reunion, holiday, ritual, ceremony etc. to look forward to no matter the age.

I myself just had another birthday. Do I want to be one year closer to 40? No! But there is nothing that can be done to stop me from becoming a year older. I can deny it, ignore it, get angry or experience a whole host of other emotions; however nothing changes the fact that I am closer to 40. In this way, when people are faced with a NON-Curable condition and come face-to-face with their mortality, there will be nothing they can do to change that. The real question is not, “do you want to live or die?” rather, “for the time you have left, how do you want to live?”

The following is a great quote from an unknown author.

“You only live once.

False!

You live every day, you only die once.”

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.