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Just
as the relaxing atmosphere of the barrier islands can change in
a moment, so too can our lives when accident, stroke, or aneurism
descend on us or on someone we love. Like a hurricane, sudden illness
or accident inevitably presents a crisis for both patient and family.
Hospitalization brings with it a loss of control as families are
thrown into an environment with unknown equipment, strangers, different
sights and smells. In this uncomfortable scenario, people confront
mortality. Will they live or die? If they live, how will their quality
of life be affected? The family system—shorn of regular habits
and daily constructs—tilts. Long-held differences, conflicts,
and fears emerge.
The Chinese have written such an event
into their language to remind us of the potential of the moment.
In Chinese, the two characters representing crisis are ones that
individually mean Danger and Opportunity. While we know the danger
only too well, we often forget the opportunity.
In the United States, the medical
profession has established a routine way to handle illness and hospitalization.
The hospital staff works closely with the patient to face the reality
of recovery or to accept a permanent change. However, that same
staff often relegates family members to roles of waiting or observing.
Occasionally, they call on the family to make decisions for the
patient, especially when the patient is unable to communicate. These
decisions are often troubling—when to insert a feeding tube,
when to remove life support, when to issue a do-not-resuscitate
order. Understandably, the family feels ill-prepared to make such
life-and-death decisions, in part because they have been isolated
from the storm raging inside the closed unit. Despite the inadequacies
of this system, we have grown used to it, and everyone plays their
predictable roles.
At Emory, change, like a second hurricane,
is raging ashore in a new neuro ICU. In this high-tech, carefully
designed unit, the concept of “family-centered” care
is thrusting itself among the staff, patients, and families with
all the fury and excitement of a storm. Ample internal waiting spaces
and family suites in each patient room are moving families from
occasional observers to active participants right in the eye of
the hurricane. With barriers removed, families directly observe
care being delivered by doctors and nurses, and they experience
a new intimacy with the health care process. They even have a choice
to observe invasive care when it is needed.
These changes veer from normal patterns.
Expectations are confused, in a sense ushering in a second crisis.
Danger and opportunity emerge. |
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Although
patients improve faster with the presence of family, I wonder about
the other dangers and opportunities that emerge in the midst of
the storm. From a pastoral care perspective, I would like to suggest
a few to watch and monitor.
1. Will
the constant presence of family in the hospital
suite enrich or strain the family relationships?
2. Will
healing be celebrated differently when both the
family and the patient experience the same processes?
3. What
will happen to the trusting relationships between
family and the medical team as the families observe the possibility
of human error and the debate of appropriate treatment?
4. Will
treatment, especially invasive treatment, increase
awareness among families of the reality and futility of continuing
life-saving measures when the patient is too far gone? Or, conversely,
will the families’ front-row seats to the crisis reinforce
denial and unrealistic hope?
5. Will
the building of community between families grow,
as it has in the past in a common waiting room, or will it decrease
becaue of the separation of family units in individual suites?
I don’t know the answers to
these questions. I do know that we need to seek those answers.
At Emory, we have a great opportunity
to change how we give medical care with the family-centered approach
and the new supporting facilities. However, it will take more than
a new environment and approach to promote healing and enable coping.
We must intentionally create a support network of pastoral care,
social services, and patient advocacy as well as develop structured
opportunities for families to share what they are experiencing,
deeply and personally, for the first time. The Department of Pastoral
Services has allocated the resources of pastoral care and staff
to support just such an endeavor.
I look forward to the opportunity
of what we will experience, learn, and be able to do for individual
patients, their families, and the medical experience in general.
I am likewise aware of the danger of releasing the winds and rain
of change.
Woody Spackman, MDiv., is director of
Pastoral Care at Emory Healthcare. |
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