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The Need

When a child is diagnosed with a life-threatening condition, everything changes. A child and their family embark on a painful and uncertain journey that can be devastating. They often experience our healthcare system as fragmented, impersonal, and disempowering. Friends and loved ones—even dedicated and compassionate health care practitioners—often feel helpless and retreat in the face of such overwhelming sorrow and loss. The child and family are left to face one of life’s most difficult challenges alone.

There are approximately 1 million children with life-threatening conditions in the U.S., and some 7 million worldwide. These children and their families are a special and highly vulnerable population. They require comprehensive support and care, but these needs are not being met under our current system. An important study conducted by the United States Institute of Medicine entitled, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (2002), states that: “Too often children with fatal or potentially fatal conditions and their families fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs.” That study concludes with a call to action: “We can and must reduce the number of those who fail to receive consistent, competent care that meets not only their physical needs, but their emotional, spiritual, and cultural ones as well.”

A compassionate society can—and should—do more. But, with health costs spiraling out of control, how is that possible?


Our Solution

At Sophia’s Garden Foundation we believe the answer is threefold:

1 Transform our approach to how we care for these children and their families: As a society, we must take a different approach to caring for these children. We must evolve our caregiving approach such that we address all of the specific and unique needs that confront the child and their family at this time—physical, emotional, spiritual, social, cultural and financial needs—in a humane and compassionate way. This must become the standard of care for children with life-threatening conditions.
2 Create a community-based model of how we care for these children and their families: Our present model of care is top-down and hierarchical. In its place, we envision Healing in Community™, an integrated, highly-interconnected and collaborative network consisting of all those involved: family, friends, health care providers, researchers, insurers, social service and public agencies, spiritual advisors and the surrounding community. The Healing in Community™ approach puts the patient and their family in the center and grows organically, enveloping them in an infrastructure of support. In so doing, it fosters creative problem-solving, uses resources efficiently, and is self-sustaining.
3 Enable parents to create and proliferate communities of healing: Our current institution-led approach to care is limited. We must therefore empower and enable families to develop caring communities around themselves and their children, bringing healthcare professionals and laypeople alike into that healing community. We believe that when these families are given the tools and resources that enable them to manage the care of their child they can do a better job than institutions alone and, in so doing, lead the way to a new level of care. Not only will society realize a cost savings, we will re-discover our common humanity.

What is Healing in Community™?

A healing community develops when healthcare providers and other caregivers connect as human beings rather than roles, and engage in real conversations about things that matter. When this happens, the walls between professional and the human being come down. As a consequence, everyone’s contributions are honored and valued. And when that happens, the group of disparate caregivers—family, friends, healthcare practitioners, insurance provider, related social service and public agencies, spiritual advisors and the surrounding community—begins to organize into an optimally functioning system of care. Responsibility is shared and communication flows, which spurs creative solutions to arise more spontaneously.

The specific characteristics of Healing in Community™ are:

Patient-centered Institutions are at the focal point of the conventional healthcare model. In a healing community, the patient is at the center; he/she is at the hub of a network of support that arises and forms around them.

Holistic At root, healing is about becoming more whole. Therefore, the more holistically we treat the patient, the more we support the process of healing. Similarly, the more we come together as a whole community, the more we promote healing. The healing community embraces all potential members, as well as a full range of healing modalities, including medical, scientific, spiritual, cultural and artistic approaches.

Integrative When a child is gravely ill, specialists from a variety of healthcare fields may be called in. In addition, multiple social service and public agencies may be involved. Under the conventional medical model, the child is being treated and cared for by many different people, but the bonds between those individuals and agencies are often weak. Those bonds need to be strengthened and expanded to include other potential beneficial practitioners, organizations and individuals into a network of providers and caregivers. The healing community supports the development of integrative care managers who have a key responsibility to facilitate the communication between all the caregivers and who act as an advocate for the patient.

Collaborative In order for this model to be successful, it requires a degree of collaboration that is unprecedented in conventional care models. We know that many different people and groups hold keys to the solution of complex problems, but only by communicating and sharing knowledge across the boundaries and strata of role, discipline, geography and culture can we tap into the wisdom of the collective. Through collaboration we give birth to community.

Open & Egalitarian Whereas our current medical system tends to be hierarchical, the Healing in Community approach is more egalitarian. We recognize that collaboration and creativity occur most effectively in an atmosphere where people from different disciplines and walks of life are each seen and valued for the contribution they can make, and where information is not guarded, but flows freely amongst the members. A healing community encourages mutual respect, deep listening, and open and honest communication in the service of learning and co-creation.

Benefits of Healing in Community™

The Healing in Community™ approach provides benefits to all concerned.

Expand our society’s capacity to care for children with life-threatening conditions and their families while also reducing the costs to families and to society.
  Opportunities for professional and lay people alike to find greater meaning and fulfillment by inviting them to participate in healing communities that welcome their compassion, creativity and collaboration.
  The collaborative creation and growth of an open, living knowledge base that is accessible to all.
  A shift in focus from illness and dying to living fully and embracing transformation.