Hello, Vets and family members.
I have been preoccupied with recent health and family issues that necessitated my time away from a more active UOAA and VON (veterans outreach network) role; however, in the interim I did submit my letter and now the WOCN society has finally given our shared voices some printed space.
I would ask you to make an effort to directly contact all known military and VA WOCN and other staff, who have oversight with vets with ostomies, to make sure they do keep UOAA informed of their ostomy patients and whether or not they are aware of the veterans outreach network and whether they do refer the vets to this unique UOAA support.
My WOCN peers have finally printed my editorial comments in the March 2016 issue of the JWOCN.
Here is the letter:
Copyright © 2016 Wound, Ostomy and Continence Nurses Society™. Unauthorized reproduction of this article is prohibited.
118 J WOCN ■ March/April 2016 Copyright © 2016 by the Wound, Ostomy and Continence Nurses Society™
LETTER TO THE EDITOR
■ To the Editor:
After the Second World War, a group of military
and civilian ostomates came together in 1949 at
the long defunct Valley Forge Military Hospital.
Their goal and mission was to share their experiences
living with an ostomy and to make their
lives better. They had little formal education but
intuitively sensed that there must be better ways
to cope and adapt to their altered bowel or urine
elimination functions and the social stigma that
ostomy entailed. This determined group understood
the dual conflict of altered body image and
function associated with an ostomy and the respective
identity and management crises they
incurred. They were determined to create a working
group to share useful hints and spread the
gospel of better ostomy support and teaching. In
short, they became the earliest proponents of ostomy
rehabilitation.
This effort led to the Philadelphia-based
Colostomy Ileostomy Rehabilitation Association
(CIRA). Other ostomy support groups emerged
soon after, including New York and Boston-based
groups. Even at this early stage, some of the
groups were jockeying to claim their historical
place as the nation’s fi rst ostomy group. In spite
of the rivalry, it became clear that the impetus for
developing and maintaining ostomy support
groups was well founded, ultimately resulting in
a growing cadre of ostomy support groups across
the United States and eventually the world.
In 1962, the various local groups in the
United States merged into the national ostomy
group, the United Ostomy Association.
Paralleling the development of the lay ostomy
associations were the scattered efforts of some
surgeons and hospitals from New York, Boston,
and Cleveland to create a specialized role for
nurses or lay ostomates to work with them to
develop ostomy clinics or hospital-focused ostomy
rehabilitation roles. This led to the development
of the enterostomal therapist (ET), a title
coined by the Cleveland Clinic surgeon Rupert
Turnbull. The first formalized training program
for ETs was established at the Cleveland Clinic in
1968, and the second opened in Harrisburg
Hospital circa 1969.
Early ETs were ostomates chosen from and
sponsored by the lay organizations to achieve
greater expertise and skills needed to provide
more comprehensive ostomy care and teaching.
These early ETs devoted their time and energies
to the ostomy population almost exclusively. In
effect, they devoted approximately 95% of their
talents for persons living with ostomies and the
remainder to managing persons with fistulas.
Eventually, the role and title of the ET changed
to the expanded roles of the WOC nurse. Multiple
factors influence this evolution, and one of the
major drivers was the increased time and attention
these care providers were devoting to the
management of chronic wounds.
Most persons currently providing WOC care
are nurses. I estimate that 9% of these individuals
hold other credentials, including those originally
trained as ETs. I further believe that approximately
15% of WOC nurse practice is devoted to the patients
with ostomies. The few remaining ETs are
increasingly relegated by age and retirement to
the role of progenitor without portfolio. Although
they may lack an active patient portfolio, they still
possess a body of knowledge, experiences, and insights
that remains germane to the ongoing rehabilitation
goals of the ostomy populace.
As one of these lingering progenitors, I have
been asked to assist the United Ostomy
Associations of America (UOAA) with their nascent
veterans ostomy outreach network (VON).
I am a suitable stakeholder in this endeavor given
my standing as a veteran with an ostomy since
1965, a longstanding member of the UOAA and
an ET since 1970. My task is to contact all known
WOC nursing staff working at the Veterans Administration
and military health facilities to inform them of the VON
and ask their assistance in ensuring that their ostomy population
be made aware of the veterans’ outreach program.
I have also been asked to provide veterans with UOAA
Internet links and the names of the affiliated support
groups within their respective areas.
[url]https://
http://www.uoaa.org/forum/index.php
[/url]
http://www.ostomy.org/UOAA_Affiliated_S ... oups.html
I wish to report my endeavors to contact known WOC
nurse staff via e-mails sent in February and March 2015. Of
the 60 WOC nurse contacts identified at the Veterans
Affairs (VA) and military facilities, I have received only 6
replies to my inquiries. I had sent 2 letters or e-mail messages,
each a month apart, seeking acknowledgment and
support for the UOAA VON program. I suspected that the
response rate to my letters would be low, but 6/60 (10%) is
lower than I had anticipated. I could allow for a few e-mails
not reaching the intended target for reasons unknown, but
the ratio of replies still begs the question why the response
rate was so low. Either the majority of the recipients were
turned off by my entreaty or they were not sufficiently
motivated to reply or they were not sufficiently engaged in
the ongoing well- being of the ostomy population or they
are up to their eyeballs with work demands and did not to
want to add another “burden” to their list of concerns. I
do not doubt that a personal visit might generate a higher
rate of response, but I am unable to travel to more than 50
VA hospitals across the United States.
At this point, the UOAA and I must reassess reasonable
continuing efforts for obtaining a clearer picture about the
interest in and desire for a sustained VON relationship
with the VA and military facilities. Alternative efforts directly
engaging the support of a few key surgeons, who
may be able to “mandate” a clearer role for all veterans
with ostomies to have access to the VON, also may be indicated.
Since the VA and military facilities still operate as
a command and control entity with traditional vertical
reporting (narrow span of control), it may be suitable to
follow this management model. If a protocol (ie, a standing
order) can be established and disseminated throughout
the facilities that all ostomates are to be given UOAA
and VON resources, then the burden to follow through on
this order would not fall solely to the discretion of an
aware and sympathetic WOC nurse. Instead, the protocol
would be implemented with or without benefit of WOC
nurse involvement. I suspect this approach to be a long
shot, but, given the poor response to date from the supposedly
attuned WOC nursing staff, I believe it worthwhile
to consider this additional approach. Again, I am
left somewhat dismayed at the paucity of replies from my
WOC nurse peers. If I am not able to garner a decent level
of response, what hope is there for anyone else?
We do not know how many veterans with ostomies are
apprised of the UOAA VON. One of the shortcomings I
believe is that WOC nurse colleagues struggle to maintain
accurate and comprehensive data. Past reasons expressed
by my peers for this shortcoming range from limited time
and experience in acquiring and maintaining a comprehensive
and workable database to concerns for legal jeopardy
and HIPPA privacy constraints. As a result, we at
UOAA remain in the dark knowing how a vet comes to our
Web sites.
So, what lessons are to be learned from this? Are my
characterizations accurate? Am I being too impatient? I
honestly do not know what to make of it all. I do know
that history does inform us, if we choose to permit it,
about likely future events.
Recently, WOCN Society office staff called for historical
images and artifacts to be submitted for an upcoming
retrospective review or celebration of the Society and
WOC specialty practice. I took time to ferret out some images
and historical tidbits to assist this effort; however, I
also question whether too much emphasis is being applied
to the membership and not enough upon the historical
mission of the WOCN Society. It is not an
uncommon practice for groups to commend their members
by paying homage to some of their early leaders and
supporters—I suppose we all like a pat on the back and a
well-intended thank you now and then. This retrospective
request did help me appreciate and reminisce about the
tie-in between my recent effort on behalf of UOAA and
their veteran outreach network and the historical underpinnings
of the WOCN Society. If we are to celebrate our
history as a group, then we should give homage to those
early veterans and civilians who gave birth to ostomy rehabilitation,
which then led to the emergence of the professional
ostomy rehabilitators, the first ETs. How timely
and beneficial it would be if the WOCN Society would
respond more affirmatively to the UOAA’s veterans with
ostomies outreach network. What a way to come full circle
with our history!
Mike D’Orazio, ET (retired)
Broomall, Pennsylvania
