The value I bring to my clients is often hard for other people to understand unless they’ve experienced navigating a complex medical situation themselves. At times of medical crisis, we assume the professionals will take good care of us and the system will flow, but often what we find is an unruly process unlike any we’ve encountered before. Change is certainly needed. While I embrace change and feel strongly that healthcare must be and will be delivered differently in the future, my optimistic nature is often tempered by the reality of how consumers actually experience the healthcare system.
The truth is there is not one single professional who accompanies a patient as he or she makes transition after transition in the system. Accountable care organizations, patient centered care and medical home models will be helpful, but we have to wait and see whether these new models will really improve the patient experience.
My client Rob’s story illustrates the numerous transitions of care in our current healthcare system. It’s with his wife Barbara’s permission that I share with you his story.
Starting in the Emergency Room
Rob began his journey in a local emergency room where an MRI of his head revealed a suspicious tumor. A neurosurgeon was consulted and the next day, a brain biopsy was performed (transition #1). I was with his wife Barbara following the surgery as the news was delivered that Rob’s tumor was a glioblastoma, probably at an advanced stage. We hung on the surgeon’s every word and he did a great job of answering most of our questions but our interaction was brief. Rob and Barbara quickly transitioned to a medical oncologist who would manage Rob’s ongoing care (transition #2). With a tremendous sense of urgency, we arranged for a second medical oncology opinion. Because all of the physicians involved were from different hospital systems, getting appropriate medical records and pathology slides to the new consulting physician was not an easy task (transition #3).
Once a treatment plan was developed, the radiation oncologist became the point person (transition #4). A nurse practitioner, a social worker, a second oncologist conducting a research study, an alternative medicine physician and an acupuncturist all became members of Rob’s care team (transitions #5-9).
When Rob experienced major complications of seizures and hospitalization was required, yet another neurologist was consulted (transition #10). Following that, some intense urological issues required an urologist join the team (transition #11). Rob spent several weeks in inpatient rehab (transition #12) before coming home with the home care services of a nurse, physical therapist, occupational therapist and speech therapist (transitions #13-16). Just keeping track of all the players, the different organizations from which Rob received care and the multiple sets of medical records that were created was at times a major challenge.
In the month of May, Rob returned to the hospital three times and entered two different inpatient rehabilitation settings at which new teams of physicians were consulted (transitions #17-20). During all of this, Barbara and I were researching options for Rob’s care outside the hospital, including private in-home care, outpatient hospice services, inpatient hospice care and long-term care facilities. In the end, with a great deal of support, Barbara brought Rob home and hired private nurses to assist them. Rob passed peacefully in the comfort of his home with Barbara by his side.
In addition to managing Rob’s day-to-day health care, Barbara had to deal with the tedious task of filing a claim with their long-term care insurance provider to help defray the exorbitant costs of private home care. This added an entire new level of complexity. Situations like this often create a perfect storm in which families find themselves working at the intersection of balancing health, finances, legal matters, living arrangements, quality of life issues and end-of-life decisions.
You might be wondering what my role was in all of this.
As their advocate, I helped Barbara keep track of everything related to Rob’s care. Not only did I help identify areas of concern, I also served as an objective sounding board. Perhaps most important: I represented Rob’s baseline and was the single consistent professional who followed him through every transition. Problem solving ranged from reporting subtle changes in his status to the appropriate provider, to questioning treatment plans, to making all of the arrangements to support Barbara as she brought Rob home for the final weeks of his life. There were days when the decisions Barbara and I made at 7:30am were altered at 11:00am and changed again by 4:00pm.
As this story illustrates, the degree of support that families need during a medical crisis is often inadequate under our current healthcare system. Family members are forced to play a crucial role in tracking information and advocating for loved ones. And yet this can be an overwhelming assignment, especially if the family member has other responsibilities.
At Healthassist, we fill this gaping hole in our system by providing the knowledge, trust and continuity of care that’s missing for so many patients and families.
Readers, I hope you never have to deal with a medical crisis like Rob’s. But if you do, you know exactly how to find me.