Top 3 AAHPM Assembly 2013

This time of year the hospice team expects IDT meeting to extend a bit longer. Staying true to form, I’m bringing ideas from the annual AAHPM assembly home.

Here are my top 3 take homes:

1.  A new thing to try:  Lesson from The Oliver’s Story

The first thing I read from morning report was “please call the patient’s daughter…she is having a difficult time…she is telling family about cancer”

The most poignant part of Oliver’s story was the discomfort of those around him with the news of his cancer.  The idea of how people react to the strangeness of death is not new but honestly something I have not paid significant attention. David Oliver played the role of comforter.  I will make a concerted effort to ask patients how those around them are reacting to their illness and how they are coping with other’s strangeness to death.

2.  A validation:  Billings and Block, advance care planning may be “too soon”

I followed this on twitter and afterward discussed with some that attended this session.  I believe Block and Billings stated that advance care planning may be  “too soon”.  While this may ruffle many feathers, it validates my experience.

A quick thought experiment:

Values + Preferences = Goals

or

Goals + Preferences = Values

Perhaps none of the above is true.

In my experience values is more constant where goals and preferences are relative to narrative and context.  Goals and preferences change. An advance directive measures preferences not necessarily values.  In many of my patients, regardless of AD or not, I’m having conversations sussing out values with patient and family.  The harm of having an AD that is “too old” is that opportunities for these conversations may be passed and values may be misguided.  In regards to having a health care proxy, I don’t believe that this can be done “too soon” but at the same time, there are many times the assigned health care proxy may not truly understand the patient values so values are determined by a gestalt.

I am for advance directives, just not “too soon”.

Feel free to flame away.

3.  An inspiration:  Biren Saraiya, Google Chat

Biren is using google chat to teach oncotalk principles.  I think this can actually scale from a teaching tool to an actual patient/physician conversation tool.  Language and nuances are evolving in chat written speech chat. (there is a nice TEDtalk on this, but I can’t find it!).  Patients can actually have a pretty strong connection over chat, maybe even stronger than phone.  While never as good as face to face, I think it can scale.  That pumps me up.

What are your top 3 take homes?

Day at work

Dear kids,

Here are some things I heard at work today.  Guess the lessons.

“This was a wonderful experience given the circumstances. You and your team are a blessing.  Thank you”

“I’ve lost all my physical strength so I amuse myself in my mind.  I often imagine myself in my small corner of heaven, under the umbrella of truth and love”

“Don’t say ‘thank you’.  Help me!”

“What is it like when you’re actively dying?  Is it irreversible?”

“Let’s go for it”.

There’s been non-work related emotional stress for me today.  Unnecessary resentment I’m learning to release.  Grateful for these things today: Gethsemane, mom, my group of friends, and work.

Love,

Daddy

24 hours

Dear kids,

Today I woke up at 430. I’m sure it was the prednisone. Lel greeted me a bit after 5 and we had a chance to snuggle and talk a bit. Daddy and daughter time before the sunrise. Such clarity and joy in the mist of dawn. A highlight as I write this.

Feeling refreshed I put on my running tights and minted LA 26.2 techie and trotted to my morning jog. I don’t often jog  Sabbath morning, but today I felt connected. The mist, fog, cool air, and clear mind urged my being to Sabbath. Unbeknownst to  me, I zoned and wandered from trail to trail. A little into my 4th mile I didn’t recognize where I was and couldn’t see clear because of fog. Luckily I found myself at a trail head and after a circle or two, finally saw the “Vernal Pool” sign correcting my spin.  It was like I was in a trance and in my effort to connect, became disconnected.

I returned home and after 3.5 hours from waking, my Sabbath  over. I tried returning to Sabbath by going to church. I felt peripheral  today as I have neglected those relationships for several months now. Ironically, the sermon’s message was staying connected with community, staying connected to humanity.  A point to ponder.

Of late I’ve been trying  to be “a good daddy”.  Today was sub par. Thankfully Saturday was Saturday, tomorrow is Sunday, and Monday you can wait your turn. There is a sweet spot between “to do an action” vs “to be connected” and I think the lever is control. It’s a haze for me at times and I circle round back and fro, reading “be” “do” and “connect”.  I want to do it all but where do I want to go?  For now, my efforts are to let go of what I can’t control and connect.  My efforts are to connect with God, to be with God. This is how this blog starts.

“His compassions fail not. They are new every morning” Lam 3

Love,
Daddy

Disrupt

Problem: bad deaths, death denying culture
Current solution: hospice and palliative care

Hospice and palliative care – growing field, still no tipping point.

• Impact on physical symptoms – yes.
• Impact on emotional issues – yes.
• Impact on spiritual issues – yes.
• Impact on death denying culture – I don’t think so.  That’s a barrier.

Solution: Change death denying culture.  How?
Current culture views hospice and palliative as bad.  “giving up”, “death panels” – need to move away

Culture change has to happen bottom up. Has to. Patients drive culture. Needs active direction.

 
Observations: What do patient’s want?

1. Information, communication – prognosis.  Guidance
2. Validation, recognition -
3. Care.  Honesty.  Empathy. – connection
4. Understanding of disease, meds, prognosis – this falls under communication
5. Review of narrative – I think that loops back to validation, recognition

What if there was a strategic plan to change the culture of death.  I’ve got an idea.
Thought – how has having a designated driver affected drinking and driving?

Digital Orca

The ‘Digital Orca’ sculpture breaks down a three-dimensional Orca whale  into cubic pixels – making a familiar symbol of the West Coast become something unexpected and new. This use of natural imagery modified by technology bridges the past to the future….

Douglas Coupland 2010

The American Academy of Hospice and Palliative Medicine completed it’s 2011 Annual Assembly in Vancouver, BC.  Social media was largely discussed as a conduit to engage and increase visibility.  This moved many to the forefront of new tech – blurred and confused.

The beauty of hospice and palliative care is that it is often practiced in the presence of honesty, a clarifying honesty.   As we move forward with tech, may death bridge the future to the present and when we step back, may we see clearly.