I was at the gym the other day, doing a stint on the elliptical and sharing stories with my neighbor. We are both retired and full time care givers. He has cared for his elderly mother for the last ten years. I am the nanny of two rare and medically complex granddaughters.
As we chatted it became clear to me that medical care in the home is evolving at a rate that exceeds the ability of health professionals to absorb its lessons. If the health system ignores the movement it does so at its own peril which includes its obligations to their patients.
It was buddy’s odyssey of the week that made that clear. As you see, he has been intimately involved with mother’s long term complex chronic needs and has seen his mother’s symptoms ebb and flow for a decade. The majority of the time in which he and his mother engage the health system can be categorized as health maintenance and not acute care. In many ways acute care to a caregiver is simple; step back and let MD’s save a life with skills that are consistent with their pay grade. The care for loved ones who have long term chronic complex problems and live at home is driven by vagaries of daily life, absent the support of all the hospitals resources, and packed with advanced nursing skills, sophisticated equipment, and complex management skills. It is well above the pay grade of doctors and most practitioners. Just ask any caregiver of a loved one with long term rare and complex medical problems and they will tell you the system seldom has a clue.
So it is when when my workout companion sees those symptoms that overwhelm his mother’s quality of life. He has seen it before; he has a pretty good idea of the cause, and more often than not knows the actual diagnosis; the probable prescriptive needs and the support necessary to get her over the hump and back home. However, an MD is needed to authorize the diagnosis, treatment, and discharge support. You would think that it is a no brainer to accept the caregiver as a colleague. It is a no brainer but Md’s are not trained to see it that way. It is about time that changes. It is time for medical practitioners to recognize that the practice of medicine has migrated from the hospital and clinic to the home. Shorter hospital stays, the advances of medical technologies available to the home, web access to medical knowledge libraries and absurd costs of hospital based services is dictating a migration of care to the home. There necessity is the mother of invention. Passion to serve those we love is the fuel. It won’t be long before there will be a transfer of funds from away from non acute hospital based care to the home. It is time for someone to wake up. Caregivers are waiting; they are up at all hours.
NYS Rare Disease Alliance