Tompkins Weekly 10-13-14

By Eric Clay

For Stu, it was the moment he realized how much he depended on the letter carrier and the cashier at the nearby convenience store. These nearly unknown neighbors had his back. They noticed when he was not healthy or sounding confused and encouraged him to go to the doctor or take better care of himself. Stu did not like the interference of family and tolerated feedback only from the closest of friends.

For Anne, it was when she realized she was not alone, that all those years of caring for children and friends, helping them to learn good habits and stepping in during illnesses meant she could call on them or others who could help her. She just needed to learn how to ask, and how to decide who to ask, without guilt or shame.

For Gary, it dawned on him slowly. The child of a single mother, from a cash-strapped, chaotic household, Gary was an excellent student, but never learned to brush his teeth or have a bedtime routine. A professor suggested he take care of his teeth because taking care of them would keep him healthy and add years to his life, and a friend noted that he had a hard time relaxing at the end of the day without drugs or alcohol. From these observations, he came to slowly realize that self-care was health care.

The names are fictitious, but the stories are real.

Have you ever thought about who the #1 provider of healthcare in your life is? If you haven’t, you might want to, because it’s yourself.

The Centers for Disease Control and Prevention estimates that paid, professional health care cost us an average of $8,400 per person in 2010; a life-time of such care would cost $663,600.

Yet the value of unpaid self-care and the care one gives to others over a lifetime may be as much as 4 times more valuable based on a wage rate of $10-$20/hour, which is less than the cost of such help when billed to insurance but often more than such workers actually make.

This will be a new perspective for most people.

This essay suggests new opportunities for understanding and providing the healthcare we need and will hopefully change how we conduct our lives as neighbors, friends and family.

Shared Journeys and Area Congregations Together, in concert with other community groups, hope to take small steps towards developing a community-wide appreciation of informal care. As the pilot unfolds, the Bronfenbrenner Center for Translational Research at Cornell University will document and evaluate informal health care practices to determine what may or may not work.

Informal care involves paying attention to our eating habits, sleep practices, prescription and non-prescription medications, misuse of substances, exercise, physical activity, sexual relationships, emotional connection, and intellectual stimulation. Informal care is how we pay attention to the risks we and those we love take. It is also how we offer direct, physical care as well as share information, perspectives and advice with others. Informal care covers much of our health care with each person at the center of his or her own informal care community.

Yet informal care is greatly enhanced by effective formal care. Paid professional care is most effective when it makes sense to the recipients and their informal communities. We need both approaches.

Each person’s informal community is often larger than the staff backing up a healthcare professional. For resilient adults this may be 30 to 70 people, near and far, who make up their informal community regardless of age or culture. If your jaw dropped at the numbers, most people initially count only a handful of people, but after careful reflection, they make startling discoveries.

Politicians and the healthcare business community tend to support market-based or government-led healthcare. Neither system addresses the core issue — most care especially at the end of life comes from the unpaid efforts of the informal community. We need to deal with our real healthcare environment and build organically from there.

Our informal communities are the people with whom we voluntarily share our lives. They provide a more realistic, ecologically sound approach than the crisis approach to care. Most of us don’t see ourselves and our informal communities as the primary providers of our health care. Nor do we appreciate the degree to which our friends, family and neighbors shape our expectations for health and well-being

For twenty years Shared Journeys has fostered the balanced integration of informal community and professional care. We have learned that before the anxiety and fear of a crisis takes hold, healthy informal communities of care can operate as large networks of reciprocal relationships of people with mutual respect and regard, even if there are longstanding conflicts and inequalities among individuals.

When an individual and her or his specific informal community are aware of their roles prior to a health incident, they prevent the occurrence of the incident or minimize the impact of an ongoing health crisis.

Healthcare professionals promote team approaches to effectively integrate informal and paid professional care with the patient at the center of decision making. Unfortunately, paid professional care and informal care often function in incompatible ways. Similarly, formally organized volunteers—who are professionally recruited, trained and supervised—often cost almost as much as paid professionals per patient contact and function in the same way.

Informal community care is largely invisible to both healthcare providers and organized volunteers who enter a person’s life at or after the onset of a crisis. Informal care communities develop around individuals over years and decades of interaction.

We have concluded that informal community care is usually both too subtle and too fragile to engage with a highly disciplined and regulated healthcare industry as an equal care partner, unless the specific individual’s informal community is already self-aware and strong before the crisis.

The barriers to interaction are five-fold:

1) Unpaid, informal caregivers choose when and how to care for themselves as well as who and how to assist other individuals. They cannot be held accountable to employment rules or compensation that defines the provision of paid care or professional standards for volunteers;

2) Paid professional providers cannot relate to the 30 to 70 people that constitute an informal community, nor can they relate to the many roles a patient plays within that community;

3) Informal communication requires an openness and discernment about the trustworthiness of individuals in the informal community that is neither possible, nor legal due to privacy restrictions for professionals;

4) The productivity of informal communities arises out of the sheer number and redundancy of relationships and roles, which allow people to step forward or not, knowing someone else will step in; on the contrary, professional care is spare and efficient, at its best;

5) Individuals and informal communities know what is possible and worthwhile from many different perspectives–cultural, religious, scientific, economic and political. While open to engaging others, medicine is increasingly defined by a scientific framework. It also takes time to learn to communicate meaningfully with a specific individual’s informal community.

Better use of the informal community leads to improved health outcomes at no additional monetary cost. Shared Journeys’ experience suggests that earlier attention to the informal care community may help prevent health issues and may help alleviate those conditions that do occur. A strong informal community, especially if it can work with professionals, allows the paid healthcare system to perform more limited, strategic functions more effectively and efficiently.

In the weeks and months to come, we hope to share with local residents more about the importance of informal care networks, how to identify each individual’s informal community and strategies individuals may use to engage it more effectively. For more information, contact eric@sharedjourneys.net.

Eric Clay is the Co-Founder and Community Coach of Shared Journeys.