Patient Preference Epiphanies From CCCC Conference

Boy, did I learn a lot at this conference…. two epiphanies … and more.

Two epiphanies:

  1. Much of the research that informs EBP standards  ― based on organ system research  ― and that have become gospel in mainstream adult practice should not be applied to the advanced elderly population who have run out their physiological reserve.  – Per Daniel R. Hoefer, MD, in his “If Only Someone Had Warned Us” presentation.The EBP research tells one story, the Frailty Syndrome tells the rest of the story.
  2. Our clinical practices create PTSD in many adult patients.  Medical Trauma is well understood in the pediatric community, but not in our adult populations.

These may not be new information to you.   For me, these learnings brought new clarity to what I have known, but didn’t understand.

Both subjects were unsettling, because they have sweeping implications in decision making and clinical practices.

To begin … 

The Frailty Syndrome is a thing …   What is Frailty?

“Physiologic syndrome, characterized by decreased reserve, and diminished resistance to stressors, resulting from cumulative decline across multiple physiologic systems, and causing vulnerability to adverse outcomes.”     ― The American Geriatric Society

  • Lack of physiologic reserve
  • Frailty is progressive
  • It is independent of other medical disease

Clarity about the Frailty Syndrome helps me organize how to help people evaluate elements in their lives ― functional status, sociability status, and those dang medications ― that are critical elements in the foundation to decision making about their medical care.  I believe nurses are in a key position to help people participate in their healthcare decision making.

As this presentation made clear, …. there is the organ treatment approach and then there is the whole person approach.  We’re on the team of the whole person approach. 

Hoefer recommends that the routine  “Annual Physical” be replaced with a Geropalliative Exam every second or third year after age 65.  This will help inform patients and families in their healthcare decision making processes.

 Daniel Hoefer MD – Sharp HospiceCare, CMO Outpatient Palliative Care.

Then there was …  

The heart-wrenching story by a young woman about her life riddled with PTSD. 

She described how her multiple cardiac surgery experiences as a child had both positive and negative  long-term effects in her life.  The surgeries saved her life and left her with a life of PTSD that she is just  now starting to understand.

As nurses,  we all recognize the critical importance of pain avoidance in mitigating short and long term suffering, but the addition of her lack of participation in decisions and of being informed and warned of the insults to her body that contributed to her long term PTSD was staggering to listen to.  It was a helpless feeling and spawned good discussions about all the angles there are to consider.

We have to assume that every person is in a state of vulnerability, and our obligation is to help them have as much control as possible in this foreign healthcare setting and situation.

For starters, it takes us back to the Basic Steps of preserving autonomy:

  • ask for permission to do anything where touching the patient’s body is involved  
  • engage patient’s participation in all decisions
  • inform patients of all details as we go
  • ask for permission in giving advice and information

We must approach any patient who has a history of disease, illness, and sickness with the knowing that they are bringing all of those previous experiences and vulnerabilities with them to this moment.  It is our job not to trigger their previous traumas in this moment, and not to create more.

And then there was my poster presentation

Caring Language Changes Everyone

It was fun talking to other nurse leaders about the conversations we have with nurses … the importance of being able to go to the meaningful in our momentary conversations.  Just as we hope nurses have authentic caring moments with patients, why don’t we have more authentic moments with nurses?    Because we’re stressed too!

As this poster says… We cannot expect nurses to resurrect their authenticity out of the work vacuum more often, if we don’t do it more as well!


And the last topic I have to mention … 

Imagine hearing Ira Byock (Yes, author of Dying Well) and one of his colleagues talk about, “Taking Psychedelics Seriously: Responding to persistent suffering”.   Hmmm… so interesting.  Haven’t we come along way….

They gave an overview of the history and future of psychedelic uses.  Psychedelics are being used in treatment of addiction, PTSD, OCD, anti-social behaviors, autism, psychosomatic illness. Stay tuned, we may be seeing more of this in mainstream healthcare?

Yes, the conference was great!   And best of all, as always, I talked with a lot of nurses doing important work.  

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