(Article, Page 2 of 4)
Office manager Maryanne Leiby RN
believed that organizing a support group for such patients was in
order. The group, to be funded by the practice, would be offered
at no additional cost to patients of the practice, therefore ensuring
that no patient would be denied the opportunity to participate.
Leiby, experienced in the physiological
aspects of pulmonary disease, would co-facilitate the group with
a clinical psychologist. Not only would her knowledge go far to
answer medical questions that might come during meetings, but her
involvement would allow the patients to become more familiar with
a member of the staff who was a direct liaison to the doctors.
The group first met in December 1993,
and has continued with about a dozen patients actively participating
at any given time, Most of those who initially visit the group rapidly
become committed to weekly sessions. These people, diverse on most
every other measure, share on overwhelming commonality: a serious
or life-threatening lung disorder, such as cancer, cystic fibrosis,
asthma, or chronic obstructive pulmonary disease. They are men and
women ranging in age from their early 30’s to late 70’s.
The medical office is always alert to patients who may be isolated,
overwhelmed, despondent, noncompliant, or especially irritable as
potential referrals for the group.
“I see a real difference in
patients who are active in the group, “says pulmonologist
and critical care specialist Michael Gurevitch MD, “I see
it in their improved attitudes. They are not as likely to call on
the doctors or the office staff between appointments. Frankly, it’s
my impression that [participating in the support group] may even
keep them out of the hospital.”
Like all individuals diagnosed with
disabling, chronic disorders, pulmonary patients face a multitude
of stressful situations that healthy individuals can barely imagine.
The terror of being unable to breathe, fear of pain, bewildering
medication regimens and equipment, the overwhelming and often impersonal
medical establishment, reduced and unpredictable energy levels,
fears or premature death, loss of earning ability, and the forced
withdrawal from healthy friends and family who are occupied with
normal activities of daily life, are all daily preoccupations of
people with severe pulmonary disease. Because they are immersed
in a kind of subculture dominated by medical procedures, extensive
paperwork, unfamiliar terminology, embarrassing examinations, and
physical limitations, these individuals may understandably feel
a chasm divides them from those outside the experience.
“When it comes to chronic illness,”
notes John Van Dyke MD, “the social and emotional concomitants
are often worse that the physical disorder itself.”
Relative social isolation is the
norm for chronically ill people, not the exception. Moreover, as
the depression brought on by the losses associated with seriously
compromised health may manifest in irritability or overt withdrawal
in such a situation, the potential benefits of getting involved
with a group of peers are obvious. As one of the group members explained.
“Even the people who love me the most don’t truly understand
what it’s like for me, because they don’t go through
it themselves.” Another said, “[Group] is a different
world. It’s a sympathetic audience, but also one that will
confront you if you need it. This is the only place I feel completely
comfortable to open up.”
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