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Healthcare Requires Advocating for Yourself

My husband, Charles, wasn't going to get better. His neurological disease was progressive and degenerative. Our goal with traditional and non-traditional healthcare was to offer him the best "rest of life" possible. 

Every Saturday for a year I'd push him in his wheelchair to the car, lift to place him in the passenger seat and then swivel his legs into place. We were off to his acupuncture visit in Boston's Chinatown. We needed to try something different. Charles' neurological disease had affected not only his eye movements, but now his brain giving conflicting messages, tightened both the agonist and antagonist muscles at the same time. These acupuncture visits, at the very least, gave Charles an opportunity to rest and feel good for that half-hour time slot. 

Acupuncture was just one of the ways we tried to find treatment for the rare degenerative disease that in his late 40's afflicted his entire body and mind. During his digression, we experienced many opportunities to interact with the traditional and non-traditional healthcare system. And both were important in his care.

One non-traditional support came from his regular massages-eventually held at our home when he could no longer travel. Another great support recommended by my boss then was a Mind/Body stress reduction program. There we learned how to deal with Charles' negative self-talk. He struggled every day with accepting the disease. His inner dialog plagued him came across as "I can't do things I used to do," and "I might as well give up." This program helped him change to more uplifting and positive thoughts such as "How can I find meaning in what I can still do?" During the course, we also practiced and learned meditation techniques - even short, quick ones - that allowed us to calm our anxious tensions.

Traditional healthcare didn't show us the way for some of these extremely helpful, but alternative, therapies. We needed to be our own advocate. We talked with friends, colleagues, and others with the disease, as well as our doctors, to find opportunities to find relief for Charles' symptoms. That network of contacts helped to piece together options for Charles to try. But in some cases we just lucked into learning about our choices- instead of having a clear path laid out before us. I'm sure that our experience is similar to many others.

My eleven years leading the health promotion department for a large health plan enabled me to understand how the traditional healthcare system worked. But when faced with Charles' terminal illness, we still had to chart our own course to make it through the myriad of doctors, specialists, tests, treatments and medications. In the traditional healthcare system, care is generally not highly coordinated, even with the best intentions of the doctors. Better coordination of care along the spectrum of traditional to non-traditional therapies could make a difference. But will that coordination of care come in the future model for healthcare?

I've started to see progressive health plans and employers integrate care by providing health "advocates" to help patients navigate the system more effectively. These health advocates tend to be open to linking patients to complementary therapies.

Health plans won't always be able to pay for all of the care, but they can make sure that people know "best practices" and how to find the therapist with the highest success rates and outcomes. That knowledge can make healthcare consumers wiser in their decision making.

In addition to health advocates, health plans are beginning to consider the whole person when providing support-finding ways to address the emotional as well as the physical needs. And they are including the family in exploring solutions.

Strapped financially from the high costs of healthcare, employers have required health plans to offer options that shift more significant amounts of the costs onto employees-as a way to force more responsibility in how employees spend healthcare dollars. Ultimately, they expect individuals to adopt healthier lifestyle habits to prevent disease in the first place. And then once faced with health conditions, people need special assistance in coordinating care-mapping the best of alternative therapies with conventional ones.

But no matter how progressive health plans are in the future, I'm convinced that we'll still need to be our own advocates-learning about our options and coordinating the best care we can find between traditional and non-traditional practitioners. Each of us is unique in how we want to deal with the health needs we face for our selves and our family. We need to understand our uniqueness, utilize the networks available for support and chart our own path.

Now, as well as in the future of healthcare, we need to engage actively in identifying our options to enhance the care we receive.

This article was originally published in Sacred Pathways Magazine

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