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:
- 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.
- 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.
- Call the regional Elder Service Council. In our area, services like Meals on Wheels are coordinated at the regional level.
- 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.
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.