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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.
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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. |
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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. |
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The collaborative creation and growth of an open,
living knowledge base that is accessible to all. |
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A shift in focus from illness and dying to living fully
and embracing transformation. |
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