A: Rabid Advocates — okay, poor choice of words in this case, how about “dedicated advocates?”  As a family caregiver, we know how vital it is to be involved to coordinate and have a holistic knowledge of an individuals needs and the new system, as I understand it, misses the mark.

I attended an event and heard Howard Gleckman who wrote “Caring for our Parents”  and who is an accomplished journalist, researcher and “family caregiver.”

I’m not in the senior health care industry, but like to hear what’s going on since we have been so directly impacted by the needs of my parents. Mr. Gleckman shared how one of the new trends emerging is a coordination of medical care with long-term care which represents a merger of services from Medicare and Medicaid. There are more than 7 million Americans who are being served by both today — but forecasts show this number rapidly growing as the boomers age into the program and spend down their retirement and savings and qualify for these services. Most likely, the model will grow and be offered to more Americans and could be the next generation of long-term care options.

In general, under the new models the providers will be rewarded based on “outcomes” not “delivered care”  — I would say that is a good thing. However, the ways to measure this seemed purely clinical — number of falls, number of hospitalizations, number of deaths etc. Changing the way to measure and pay doesn’t fill the gaps in our current models of medical care. Where is the quality of life component factored into the model?  Cutting compensation if there are too many deaths seems like a bad idea — even on paper.

Most doctors rely on the patient to detail medical history and advocate for themselves. My parent’s had no short-term memory. My Dad didn’t know which pills he took or why, that he had broken his hip and my Mom would never share that she had a stroke. I was frustrated when those doing the initial intake interviews would look to my parents to answer these questions — not their electronic medical records that were a keytouch away. I created a list of Do’s and Don’ts to better manage the appointments with my parents because having the doctor ask me everything was frustrating for my parents and they would disagree with some of the facts I reported.

The move to meld the services and push down costs does not incorporate the quality of life — especially when it comes to the aging population.

Obamacare changed the system, but at this time, doesn’t really fix it.

As I walk toward my father’s funeral, I don’t waiver on my belief that he had a swift and loving end to his life. However, I spent several months pushing to understand why my Dad was slurring. I reported it monthly to the health care workers while he was in Assisted Living. I eventually took him for a physical when I was underwhelmed by the progress on finding the root of his changed speech. Part of the problem is that most doctors rely on the patients ability to recap their medical history and concerns. Someone with dementia is unable to manage this.

I didn’t find a solution until I requested an assessment from the staff Speech Pathologist who finally raised the red flag on my Dad’s health.

I struggle with the fact that I didn’t manage as a better health care advocate. By the time my Dad’s cancer was detected, it was really too late to treat. We recognized that putting someone with dementia through cancer treatments would not ultimately improve the quality of his life. What an awful choice that we his children were faced with.

My brother and I who walked this journey with our father were hit hardest by the grief. We rode the roller coaster of hope when we thought we could buy my Dad a few more months of life. In one week, our journey flipped from remission to hospice.

We thought long and hard about the choices we were making and based on the beliefs our father had shared. We vetted our choices with all four children. We did not make our decisions lightly, and some of us still carry the grief and guilt scars that resulted from our choices.

Ultimately, I am thankful for the time I had with my father and treasure the final days we spent together — especially because I had no idea they would be our last days and memories together.

It doesn’t exist in the current model but given the amount of caregivers and family members who have witnessed the current aging options, the lack of an advocate in the new models emerging feels sterile to me. The embedded HOPE is that family members will be engaged by the assigned ‘case managers’ which has proven to result in better health outcomes.

Any misstatements of the emerging models falls on me — not Mr. Gleckman — his presentation was fantastic and very educational. However, after hearing the facts he presented, I felt like I was listening to a new system of care to that would be just as likely to be presented to care for dogs. Perplexed.

This is a HUGE topic and I skim over some key issues. I’d love to hear from you. Please share comments or your blog posts that tackle some of these issues.