The article at right appeared in the Sept/Oct 2006 edition of Sacred Pathways: A Journal of Yoga and Higher Consciousness.

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Health care's future will still require advocating for your self
By Janet Edmunson, M.Ed.

My husband, Charles, wasn’t going to get better. His neurological disease was progressive and degenerative. Our goal with traditional and non-traditional health care 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 found the acupuncturist through a friend at work. We needed to try something different. Charles’ neurological disease had affected not only his eye movements, but now had stiffened his muscles—his brain giving conflicting messages to tighten 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 now in his late 40’s afflicted his entire body and mind. During his progressive decline, we experienced many opportunities to interact with the traditional and non-traditional health care system. And both were important in his care.

One of the biggest non-traditional supports came from his regular massages—eventually held at our home when he could no longer travel. Another great support was a Mind/Body stress reduction program we attended based on a recommendation from my boss at the time. In it we learned how to deal with Charles’ negative self talk. He struggled every day with accepting the disease. The self talk that 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?” In addition, during the course, we also practiced and learned meditation techniques—even short, quick ones—that allowed us to calm our anxious tensions.

Traditional health care 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 us 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 who have health needs.

In my 11 years of leading the health promotion department for a large health plan, I understood how the traditional health care system worked. In addition, I had extra resources available to me through my contacts there. 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. Even in the traditional health care system, care is generally not highly coordinated, even with the best intentions of the doctors. But 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 health care?

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 health care 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.

Currently, the health care system is moving toward putting more responsibility on the individual by adding higher co-pays and deductibles. This is being driven by employers who are the biggest purchasers of health care. Strapped financially from the high costs of health care, they 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 health care dollars. And it appears to be working. But only so much of the costs can be put onto individuals, so this solution will probably be shown to be a short term answer. Ultimately, people need 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.

While Charles and I faced the challenges of a rare, terminal illness, these concerns apply for any recurring condition someone might have. It could be painful arthritis, nagging headaches, low back pain as well as chronic diseases.

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

© Janet Edmunson.
May be reprinted with author’s permission.



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© 2005 Janet Edmunson. All rights reserved.