The Missing Diagnosis: Why The Role of Caregiver Is A Clinical Care Need
If you or a loved one has ever been in the hospital, you are probably acquainted with the hospital release process. First, there are papers to sign. Then someone hands you a sheet that has all the “do’s and dont’s” for the person being released along with medications, follow-up appointments, etc. The patient is then helped into a wheelchair and rolled out the front door of the hospital into the waiting arms of a loved one. Many times, the hospital discharge is treated as the finish line, when in reality it can be the starting line, especially for the caregiver. For many caregivers, the transition from hospital care to home care is one of the most vulnerable points in the caregiving journey.
Discharge Plan vs Caregiver Plan
When a patient leaves the hospital, the healthcare system provides them with a discharge plan. This plan assumes someone will be there to implement it’s components. Enter the family caregiver. The patient leaves the hospital with a diagnosis. The caregiver leaves with a responsibility that could last weeks, months or years. Once the hospital doors close behind the patient, the caregiver is opened to a wide range of responsibilities identified in the discharge plan that could include: administering medications, scheduling appointments, monitoring symptoms, preparing meals, assisting with personal hygeine and various other tasks. These responsibilities become even more challenging where the caregiver is also holding down a job at the same time.
This leads us to the important distinction between a discharge plan and a caregiver plan. A discharge plan tells us ideally what should happen to the patient after they leave the hospital. A caregiver plan considers whether the person expected to make those things happen is able and prepared to do so. A caregiver plan might ask questions like:
Who will be the person providing the care?
Does that person (the caregiver) understand the patient’s condition?
Does the caregiver know the warning signs that require medical attention?
Has the necessary equipment or accommodations been installed to ensure the patient’s safety?
Can the caregiver manage the follow-up medical appointments?
Is someone else available to provide backup?
Keep in mind that the goal here is not trying to turn family members into nurses, but to acknowledge the reality of what happens after discharge. Often, the caregiver is the person who connects the healthcare system to the patient’s daily life. And if we know that person will be responsible for carrying out a substantial portion of the care plan, shouldn’t we also know whether they are prepared? So rather than thinking of a family caregiver as simply the patient’s relative, perhaps we should recognize them as an essential member of the care team.
Caregivers Need a Place In the Medical Record
Our podcast guest, Cheryl Field, (TEDx Talk: “The Missing Diagnosis in Healthcare”) strongly advocates for recognizing caregiving as a medical diagnosis. Under her strategy, the role of caregiver would become a clinical care need. Clinical care need is a specific health requirement that calls for direct medical diagnosis, treatment, monitoring, or specialized intervention by a licensed healthcare professional. She argues that in addition to other benefits, this would create official standards of care and provide caregivers with access to various support services the moment they step into caregiver roles. Field boldly presents our healthcare system with a question it can no longer afford to ignore: Who is caring for the person who is caring for the patient? In other words, Field is not simply suggesting a diagnosis code for caregiving, but also recognizing and treating the caregiver role as an essential component of the overall transition-of-care plan.
Remember the hospital discharge process we discussed at the beginning of this blog? Well, imagine a different discharge process where the medical record stated: “Caregiver Identified.” Before the patient leaves the hospital, a primary caregiver is named in the medical record. The caregiver is asked what responsibilities they will be assuming. Questions are answered and training is provided. Necessary equipment is confirmed and resources identified. The caregiver receives a direct contact for questions and follow-up conversations after the patient returns home. This creates a completely different picture from that of our current healthcare system where the patient is wheeled out of the hospital and the doors close behind them, shutting their caregiver off from needed direction and support around homecare responsibilities. This can be an overwhelming and frightening situation for most caregivers, leading to anxiety, depression, burnout and/or physical exhaustion. Our current healthcare system may therefore be treating one patient while inadvertently creating another person at risk.
From Code to Call of Action
For millions of families, family caregiving is the bridge between what happens inside the hospital and what happens after the patient returns home. If healthcare organizations consistently identify caregivers, we can begin to better understand the weight and impact of the responsibilities they are assuming and how the healthcare system can more effectively support them. Field’s diagnostic code idea can help promote recognition, documentation, data and accountability within our system. Eventually, that information could help drive better transitional care, caregiver education and training, respite care, and reimbursement models that are more caregiver-supportive. So the real challenge may be creating a healthcare system that actually responds when caregiving is documented.
Maybe the next generation of healthcare should begin with a simple question before every discharge: Who will be caring for you when you get home, and what does that person need from us to succeed? This question could change everything.