Transition Gaps and Their Impact on One Family

Recently, my husband Dave met a gentleman by the name of Nate. He was repairing a door at his mother-in-law’s home. He paused and walked over as Dave approached, curious to know more about why he walked with a cane. Dave mentioned having had a stroke. It was at that point which Nate shared the current situation he and his family faced.

A couple days later, Dave asked me to take the walk with him. As we got further down the street, Nate called out “Hey Dave” as he stepped off a ladder. Dave introduced me, “I want you to meet my wife….”. The first words out of Nate were “I heard about you… you are a nurse, right?”. Normally, I avoid telling people I’m a nurse because there is an inevitable over-sharing of personal health information that I really do not need to know. Unfortunately, the cat was out of the bag. I politely listened to Nate describe the current situation. Warning flags began popping up in the back of my mind. I asked if there was any support services coming to the house. “Not now. She had someone, but they stopped coming. My wife is doing her best, but she is exhausted. No one else in the family (e.g., other siblings) helped out. She’s trying to work her full-time job and take care of her Mom and that is a full-time job too. My daughters and I pitch in, but I feel like we are all drowning. I mean, she can’t even get to the toilet without someone helping”.

I suppressed the urge to launch into full case manager mode. But, our neighbor was clearly in need of help, so I asked if he would mind me giving a couple suggestions. His rigorous nod triggered a few basic suggestions:

  1. Call the primary care provider and last in-home provider and ask them to come back and re-evaluate the situation. He noted that his mother-in-law was making progress but needed more help to be more independent. Perhaps it was time to assess if additional therapy would be beneficial.
  2. Call the city’s Elder Services office to learn more about available support services. Our city offers a wide range of services as well as referrals to other services.
  3. Call the regional Elder Service Council. In our area, services like Meals on Wheels are coordinated at the regional level.
  4. Call the local VNA to ask about Hospice and Palliative Care services. I was careful to state that that hospice does not equal “giving up”. I also noted that when a Medicare beneficiary initiates hospice services it requires certain commitments that the family may not be ready to make. The only way to learn was to have someone come for an evaluation and talk to someone from the hospice.

I fully realize that these few options will not solve the challenges faced, but I saw a flicker of hope on Nate’s face. It wasn’t hope that his mother-in-law would return to her pre-stroke self. It was hope that there were things his family could do.

After a few more questions, I excused myself. As I went on my way, I was struck by how little this family understood about access to care and resources. Over the previous 6 months, this person had three major admissions – acute hospital, rehabilitation and home care. Sadly, the family considered themselves to have nowhere to turn for help.  Isn’t a goal of care transition giving people somewhere to turn?

Our healthcare system has been overly focused on transition of care from acute hospital to home setting. However, that is changing. If the roll out dates remain intact, skilled nursing facility (SNF) readmission penalties are set to begin in 2019 as part of the Skilled Nursing Facility Value-based Payment (SNFVBP) system (Medicare.gov, 2018). Home Health Value-Based Purchasing (HHVBP) Model rolled out in nine (9) states in 2016 (Medicare, 2016). It is anticipated that initiative will be mandated at all home-care agency by 2022 (Home Care Home Base.com, n.d.). Basically, there will be value-based financial risk across the entire care continuum.

Despite the promise of Value-Based Purchasing initiatives, our system still has large cracks and people falling through them. On top of that, there is a human toll which is exacted on every patient and family caregiver falling through these cracks (and even on those caught in it). Nate’s mother-in-law is already compromised. Involved family members are functioning on overdrive as they attempt to balance full-time jobs along with a blossoming home care crisis which is putting family caregivers’ personal health in jeopardy. I wonder at what point will the caregivers require hospital care due to the constant stress? Where is the quality measure for that?

I am sure well-meaning providers launched into their schpiel of instructions and handed over reams of paper spelling out transition of care plans. That paper was a small part of the many other documents handed over as the client left one care setting for another (or for home). In reality, almost all verbal instructions are forgotten if not repeatedly reinforced and all that paper ends up on the a desk, bureau or counter gathering dust. The pages and the talking points are meaningless to someone who needs help but has no idea of where to turn.

In thinking about this situation, I am left to ponder…

  • Have we over-engineered the transition process?
  • Have we created a monster that over-relies on a little talk and a lot of documents?
  • Have we lost sight of the human factor as we check off all our transition of care task boxes?

I don’t know the answers. What I do know is that this family feel helpless, isolated and has no idea where to turn. To my way of thinking, this is a major failure in transition planning and a ticking time bomb that is not a blip on anyone’s radar — yet.

References

Home Care Home Base. (n.d.). Home Health VBP: These 20 Measures Will Determine the Fate of Your Agency. Accessed April 28, 2018 at https://hchb.com/blog/homecare-vbp-these-20-measures-will-determine-the-fate-of-your-agency.

Medicare.gov. (2018). Skilled Nursing Facility Value-based Payment Program. Accessed April 20, 2018 at https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Value-Based-Programs/Other-VBPs/SNF-VBP.html.

Medicare.gov. (2016). The Home Health Value-Based Purchasing (HHVBP) Model. Accessed April 20, 2018 at https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Value-Based-Programs/Other-VBPs/HHVBP.html.

No Hostage to Fear

The massacre in Las Vegas is a horrible tragic event. I mourn the senseless loss of innocent lives taken by a nobody. Thousands of lives will forever be affected by the events which transpired at the Route 91 Harvest Festival.

I’m speaking at the AAMCN conference at Mandalay Bay in three weeks. But you know what? I never considered not fulfilling my agreement. I will not change my plans to attend and speak at this event.

I will not live my life in fear of a nobody schlump who “just snapped” for no reason or a zealously crazed terrorist. None of us should ever bow to the insanity that happens all too often these days. None of us should become desensitized to murderous violence. When we do, we lose our own sense of humanity and become collateral victims of it.

Stand up and do something to honor the lives lost and affected by this tragedy. My very small part is to refuse to change my plans to speak at this event.

Do your part and refuse to be held hostage by fear or the nobody schlumps and crazed terrorists win.

This is still America!

We are human beings you know!!! When will someone be human to us???

(This was written over two years ago in the aftermath of a family emergency. Being on the other side of the health care service delivery equation was more stressful than anything in recent memory because we were not treated as people…. we were patient and caregiver. Labels used to identify people in the health care system instead of using their actual names. How about this… dispense with the labels. Maybe then health care will be both healthy and caring.  What I know is, something needs to change.).

What I know.

I love. I feel. I express best through words. I create. I carefully consider but am prone to making decisions based solely on intuition. As intensely as if bearing down to obtain the most vivid tone and hue, I feel. I hurt.

Not wishing to focus on the negative, but it is through I must proceed. So let’s start with this – I’m not looking for validation. I don’t care to hear the reasons why something I feel isn’t true – from anyone else’s point of view. Everything I feel is my truth. What emerge are tones, shades of me at various points in time. Intensity is transient and frequency variable. Regardless, it is truth – mine.

Alone.

Perhaps never as before, I felt very alone and cold on March 2nd 2014.

A thud represented the reality in which I found myself. A thud and a weak cry for help. What I found was a man oddly propped against a wall, hanging between life and not.

Instinct took over…
Lie him down….
Run downstairs…
Find a phone…
Unlock the front door…
Run back upstairs…
Breathe…
Tell fingers to press the numbers 9-1-1…
Speak… say something…
Help us…

Help me up.
No hon, stay there.
I’ll help you.
No honey, stay where you are… you are having a stroke.

That was the first time I said it. Stroke.

9-1-1 Operator. What is your emergency?
My husband is having a stroke.
Yes, he is conscious.
His right side isn’t moving…. He has a facial droop… speech slurred.
Lying on the floor
Oh yes… our address is…
We are upstairs… the door is unlocked…

I remember Skooch sat next to his head the whole time.
It was as if she knew the problem was happening in his head.
She just sat there until I put her in the closet when the rescue team arrived… and upstairs they came
to help.

They were nice… and took care of you… and took you outside to the ambulance… and to the hospital and away from me…

I called Mom…

Meet me at the emergency room.
Dave is having a stroke.
I have to go.

I can’t really remember this part. I got dressed. I let the cat out of the closet… or the bathroom. I got into my car… and started to drive. I realized I beyond frantic so I dialed another number. What time was it? No idea.

I phoned a friend…

Dave is having a stroke.
I’m going to drive off the road if I don’t calm down.
I can’t breathe.
I can’t believe this.
I need to calm down or I’ll be in the ED bed next to him.
Ok… I’m at the hospital. I’m going in now.
Thank you…
I’ll let you know.

Walking in to the ED…

Where is my husband?
He isn’t in the system yet?
Huh?
So he doesn’t exist.
Oh, there he is.
We’ll let you back soon.

Sitting… waiting
Finally
Come with me.

Doctor speaks clearly… slowly
Simply but not condescendingly
This is good but all I hear is
Stroke
Too late for clotbuster
Wait and see
Stroke
Blah, blah, blah
Stroke
Too late for clotbuster
Blah, blah, blah
Stroke
Blah, blah, blah
Too late for clotbuster
Stroke
Blah, blah, blah
Stroke
Too late for clotbuster
Too late for clotbuster
Wait and see
Blah, blah, blah
Blah, blah, blah
Blah, blah, blah
Blah, blah, blah
Blah, blah, blah

Entering a big room
Feels like a cave
In the middle of it all
A stretcher
Tubes and wires
Oxygen
Monitors
Milling around
No one explains a thing
Do they think I already know this stuff?
Barely a hello… from anyone
We are human beings you know!!!
Will someone be human to us???

Finally
Sorry hon
He sounds funny but I understand him
Half smiling
What a mess I made of things
Sorry
It’s ok… we’ll get through this together
I love you… love you too.

Mom comes in
More family arrives… how did they know?
Baby carriage
More family arrives… in and out
Off to CT

When did you have your first stroke, sir?
Huh? I didn’t.
Oh, but you did.
Oh.

Back to ED.
Admitting for a few days
Telemetry
Up to room
Hooked up
Beeping
Tubes in
Tubes out

Ice chips, please
He’s been waiting hours
Well ok.
Have to wait for admitting doctor for more

So we waited hours and hours and hours

This is ridiculous, where is the admitting doc?
He needs something to keep his mouth moist at least
We are human beings you know!!!

When will someone be human to us???

Family arrives… stays a while… leaves.
Kills some time where we aren’t just sitting and waiting for

Finally – alert the media
THE DOCTOR arrives
Actually, a pack arrives
Resident, medical students… in lock step
A bio mass
Introductions
Blah, blah, blah
Blah, blah, blah
Blah, blah, blah
No idea who we are talking to
We are human beings you know!!!
Will someone be human to us???

I’m staying
I don’t care
Afraid to leave him alone in the hospital
There seems to be no one around
No one watching him
No one talking to him
Can’t you see he is afraid
No one cared
What happened to caring care?
A relic… like a rusted out caddy at some roadside exhibit in the dessert deadlands.
It can’t be… but it was
That day

No one asked why I was there
No one asked me to leave
Was it a relief that there was one fewer person to have to watch?

It felt like people simply headed off to their lives
Thankful that they could walk away
That this was not their life that just exploded

It was sometime in the middle of that first time when were both awake and clinging to each other… and crying… and sorry
Sorry I did this to us
It’s ok… we’ll get through this together
I love you… love you too.

I hate March 2nd

SOLD OUT! A report from the 2016 CMSA Annual Conference

The CMSA Annual Conference took place in Long Beach, California this past week.  It was the first time in years that I attended the full week of conference events and I was excited to participate. The general mood was extremely uplifting and positive. People were happy to be there and fully engaged in both entertainment and educational offerings. I thrived on the fabulous networking and the atmosphere of collegiality. International attendees who I met represented South Africa, Germany, China, and Singapore. That says a lot about how important professional case management has become around the globe, not just in the United States.

A couple highlights worth mentioning…

My dear friends and trusted colleagues Ellen Fink-Samnick and Hussein Tahan were honored with the CMSA Award of Service Excellence and the Lifetime Achievement Award, respectively. I cannot think of more deserving recipients and was honored to have witnessed the presentations at the Gala Recognition Reception.  On top of that, the Case Management Society of New England was recognized with a Chapter Excellence Award. CMSNE raises its own bar year after year.  When good friends and my home chapter are recognized for their fabulous contributions to professional case management, it doesn’t get much better!

Wolters Kluwer’s booth was hopping busy with both a scheduled and an impromptu book signing. COLLABORATE for Professional Case Management sold out, as did the newest edition to the professional case manager’s reference library, The CMSA Core Curriculum for Case Management, 3rd ed.  Although sold out, orders were still being taken at Friday’s post-conference session, Setting the Standard Through Application of the New CMSA Core Curriculum. The all-star panel of presenters were both honored and humbled by the reaction of the capacity crowd.  It was a great launch for the new Core Curriculum text. Although advanced copies were made available at the conference, pre-publication orders are being taken at the WK website. Just follow the link provided above.

Next year’s annual conference is being held in Austin, Texas. Hope to see you there!

 

Soon to be released! The CMSA Core Curriculum for Case Management (3rd ed.)

My esteemed co-editor/author Dr Hussein Tahan and I just wrapped up the last bit of work – the Index – this past week!  So much has gone into re-working the third edition but none of it would have been possible without the foresight of case management pioneer, Suzanne K. Powell. Suzanne had the vision and assembled the first edition published in 2000 (with Donna Ignatavicius) and carried through as she led the second edition in 2008 (with Hussein Tahan).

The latest edition advances professional case management practice even further, “This comprehensive, expertly-written guide provides those directly or indirectly involved in case management with information about best practices, descriptions of key terms, essential skills, and tools that fulfill the current Case Management Society of America’s (CMSA) standards and requirements. Addressing the full spectrum of  healthcare professional roles and environments, this is both a crucial certification study guide and vital clinical resource for the case management professionals in all specialty areas, from students to veteran case managers” (Wolters Kluwer, 2016). Highlights of the new edition include:

  • NEW text boxes highlighting key information and vital practices in each chapter
  • NEW and updated Standards of Practice implications in each chapter
  • NEW and updated content on transitions of care, community-based care, care coordination, Value-Based Purchasing, ethics and social media, the impacts of health care reform, and digital technology
  • NEW and updated content on accreditation in case management
  • NEW chapter that lists key additional resources, by topic

This official publication of the Case Management Society of America, embeds the CMSA Standards of Practice for Case Management directly within each chapter to demonstrate the applicability of the standards across the entire care continuum.

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The 3rd edition will be available through Wolters Kluwer, Amazon, and other fine book sellers in August. If you wish to register for publication updates, feel free to visit Amazon’s page, here.

A limited number of advance print copies will be available at the CMSA Annual Conference and Expo held at the Long Beach Convention Center in Los Angeles from June 21 – 23. There is a special post-con session the morning of June 24th from 8am-12pm to discuss the book and its importance in today’s high-stakes healthcare environment. Visit the CMSA Conference page for registration details. Hope to see you there!