It started in hospital hallways, with “I have a few questions and I don’t know who to ask,” a quick conversation at the nurse’s station, to kitchen tables, in the middle of a mock shower transfer in a patient’s home bathroom, to zoom calls through a pandemic. On one side of these conversations was the clinician (me) and on the other was a wide array of caregivers: adult children, spouses of 50 years, newly adult children, sandwich caregivers juggling care for multiple people, best friends, neighbors that became family, and siblings.
For many many months I met with these people inside the hospital, in their home and in the halls after a debrief from case management. They had questions, but more importantly they had real data that was being missed in the patients’ care because there was no where for it to formally exist. Information about side effects of medication, real experiences with mobility changes, the impact of their diagnosis and how they followed (or not) their precautions. Observational data that could provide a rich picture for diagnosing and treating clinicians, but was difficult to capture in a meaningful way.
I tried to bring this information into team meetings, where all care team members meet to discuss patient progress, but it was impossible to do it for those outside of my caseload. I knew there was something incredibly important, for the clinicians, their families and the patients, but it was getting lost in the mix. So I kept asking questions, kept meeting with families, and started to notice patterns. After moving into private practice, the time constraints that existed in the hospital were no longer a barrier, and the conversations were more detailed. Without “skin in the game” as an outside consultant versus being the clinician recommending a home or step down discharge, I asked more probing questions and heard more “this is how it really is” responses.
The technology to build a platform to formalize the observations and information from caregivers existed, but the questions, the collaborative opportunities, and the real time experiences of giving and receiving care needed to be built.
Three things that kept surfacing in these conversations
1. The load collapsed onto one person quickly and felt impossible to redistribute.
Our current communication systems with hospitals and providers are not designed for collaborative care. This makes it “easier” for one person to run point on communication because the system is designed for one caregiver, which is when the pruning of collaboration begins. As more and more components of care funnel to one person, it becomes increasingly difficult to expand their circle to include other caregivers because the body of knowledge they are up to date on continues to grow. The inertia of default caregiving is a runaway train, one that’s difficult to know you’re on until you look around and ask for help.
2. The gap at discharge was where it broke.
Arguably the dominant question in any inpatient medical setting is- “when can I get out of here?” It’s one that dominates progress updates with families, conversations with insurance carriers and care team meetings. Focusing on discharging from the hospital as the “end” date is misguided, because it’s really the beginning of the journey.
Worrying about and planning for leaving the hospital usually ends at the hospital doors. Discharge paperwork is hurried, a tutorial to check the “patient/caregiver education” box can be brief, impacting opportunities for followup questions. None of this is to say that discharge tutorials or instructions are insufficient, it’s that the volume of directions, follow-ups and tracking is overwhelming for one person to manage without the infrastructure in place to do so. The opportunity to absorb the information, ask questions in real time is limited because the “rubber hasn’t hit the road” yet, leaving the arrival at home potentially overwhelming with questions and no one to ask.
The expectations of tasks for family caregivers has changed, 15 years ago when I started as an inpatient therapist, someone with a single knee replacement would be in the hospital for a day, then inpatient rehab for 10-12 days and then home with home care. Now, double knee replacements are done as an outpatient procedure with the patient spending a few hours in post op recovery and then sent home with a caregiver to manage their care until home care comes in the next day.
3. The observations were going nowhere.
Caregivers track everything- patterns of movement/function, symptoms, medication reactions, changes throughout the day or week. It all is summarized by providers with the question “has anything changed since we last met?” This question relates to diagnosis progression, medication management or an indicator for followup testing or services, but without a way to effectively track this, caregivers are asked to summarize this into a few sentences.
If you’re in a multiple caregiver arrangement this can be complicated by one family member noticing, for example, a change in balance in the last few weeks, while the default caregiver has also noticed a change in balance but not knowing whether it was related to natural aging or a side effect of a new medication, this can put their care recipient at risk.
These three observations showed up in nearly ever conversation, to varying degrees. Caregivers were burning the candle at both ends to take care of someone and had all this data and no where for it to land or contribute to care decisions. Without a way to formalize this information, it continues to exist on the fringe of care. The data providers are looking for to make informed decisions related to care is difficult to access, but invaluable for patients’ success.
The observations of caregivers, without infrastructure to record and maintain, will continue to be the missing piece for clinicians. They know what’s working, what’s changing, and where they see a shift in behavior or function, but the healthcare system has no way to reliably capture it.
What they're tracking is the missing piece of care.
After meeting with over 100 family caregivers, the journey forward was clear- build a platform that provides the framework and space to formalize the information uniquely gathered by family caregivers. Empower caregivers as fundamental components of the care team with support, resources and tools to support them in this role. Create a way for a group of caregivers to not distill down to a default caregiving role because of communication and collaboration road blocks.
Listen first, build second.
But we aren’t stopping at 100 caregivers. We have created a survey for caregivers to share their experience and build out their care profile, for two reasons: we continue to build for the real and present challenges family caregivers need support for and we create an opportunity for caregivers to build their own care profile so that we can match vetted, “caregiver forward” supports with their unique needs, so that we reduce the time that caregivers spend looking for outside resources.
If you’re a family caregiver, please build your care profile here so that we can learn about your unique caregiving needs. If you know a family caregiver, pass it along!
Create your Caregiver profile here
Dovetail is a care coordination platform for family caregivers- built to distribute the load, capture what no one else is tracking, and connect families to vetted support. Available on iOS and Android.
If you’re a family caregiver, build your care profile here and we’ll match you to resources built for your situation.
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