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Extreme Nephrology Nursing
by ANNA President Lesley C. Dinwiddie
Forty
years ago, I was a brand new student nurse being taught all I needed to
know about patient care prior to my first ward assignment. The textbook
chapter about going to the nation’s Capital to lobby my legislative
representatives to endorse and pass legislation that would raise the
standard of my patients’ care, was curiously missing. Or maybe it was
embedded in the text on patient observation that instructed us to watch
and listen to our patients carefully and to anticipate our patients’
every need, and I just didn’t understand at the time that advocating
politically, extreme as it may have seemed, was an appropriate and
necessary form of patient care.
Thirty-nine
years later, as I assumed office as the President of ANNA, I still did
not realize that my caseload had expanded to include 20 million people
in the United States who suffered some form of chronic kidney disease
(CKD). And the President’s Vision Crystal, passed on to me by
Past President Caroline Counts to symbolize my primary responsibility
to ensure fulfillment of ANNA’s stated mission (see bottom right corner
of this page), didn’t come with explicit instructions. However, as the
year began to unfold, it rapidly became obvious that ANNA’s year of
2004-2005 would be dominated by legislative and regulatory activity
that could have far-reaching consequences for our patients and,
therefore, nephrology nursing.
Key Legislation from Past Year
ESRD
Modernization Act of 2004. Last August 2004, at our second annual ESRD
Day, ANNA enthusiastically lobbied our legislators as we toured them
round our dialysis facilities and discussed the importance of the ESRD
Modernization Act of 2004. This legislation, introduced in July 2004,
evaporated with the 108th Congress and the lessons learned in this era
of budget cutting were that, for similar legislation to be successful,
it must be a) introduced early into the 109th Congress, b) come with a
realistic price tag, and c) receive broad bi-partisan support.
The Kidney Care Quality and Improvement Act of 2005. The Kidney Care
Partners (KCP), a broad coalition of renal industry and professional
and patient organizations, took these lessons to heart. On March
16th, 2005, new legislation, promisingly titled, “The Kidney Care
Quality and Improvement Act of 2005,” was introduced to the Congress as
S 635 by Senators Santorum (R-PA) and Conrad (D-ND) and as HR 1298 by
Representatives Jefferson (D-LA) and Camp (R-MI).
As a founding member of the KCP, ANNA was highly visible for the
roll-out of this patient care-focused legislation. In addition to our
KCP representative and Past President, Gail Wick; our Health Policy
consultant and Past President, Nancy Sharp; our State Health Policy
consultant, Kathleen Smith; both President-Elect, Susie VanBuskirk and
I were present. We all were there because we believe that to improve
care for our patients in the future, the changes embodied in this
legislation must be enacted. (A summary, prepared by the KCP, of the
legislation appears in Table 1.).
ANNA’s Role in Launching This Legislation
The
prelude to the roll-out was a full meeting of the KCP Board. The agenda
for the meeting was as ambitious as it was intense. In just 3 hours, we
were instructed on all aspects of the new legislation: content and
scoring (cost to the taxpayers), logistics of the repositioning for
roll-out, the recommended advocacy program for 2005, and the regulatory
agenda of KCP. The National Kidney Foundation (NKF) reported on its
program of Patient Empowerment and Re-Branding of Dialysis to mobilize
grassroots support for the legislation. Breakout sessions were
conducted to focus on how KCP members could further generate co-sponsor
support for the bill with a key objective of positioning KCP as a
“patient-centric” coalition. The word of the day was “quality” and the
most interactive session was the presentation, “Quality as Policy and
Strategy” by Ken Kizer, MD, MPH, Chairman of the National Quality Forum
(NQF). The NQF is a highly credible organization whose mission is
to promote change through development and implementation of a national
strategy for health care quality, measurement, and reporting. Dr.
Kizer told us that “pay for performance” was in the near future and
that he will possibly be working with KCP to advise on the necessary
quality measurements. Dr Kizer has more than a professional interest in
the care of patients with CKD. His wife, a former patient on dialysis,
now has a transplant.
The roll-out itself was somewhat surreal. On our walk into the Senate
where the ceremony was to take place, we passed within inches of the
Nobel Prize winner for his work on the DNA double helix, Watson, and on
the way out, we bumped into former Surgeon General J. Everett Koop. The
Senate room for the ceremony was small and crowded with the
Congressional bill sponsors, three Washington Redskins football
players, and numerous members and guests of the KCP. Highly polished
speeches by all four sponsoring legislators were followed by equally
eloquent testimony from the individual Redskins as they described their
interest in the content of the legislation. The occasion also provided
time for networking with other organization members that had not been
possible during the KCP meeting. Nephrology nursing’s effort to educate
legislators about CKD was recognized in KCP Chairman Kent Thiry’s
address, and this was underscored by an offer from the Renal
Physician’s Association to participate in our ESRD Week.
The work to make passage of this Bill a reality began the next day on
Capitol Hill. ANNA members split up to attend various appointments set
up by the KCP with key staffers. ANNA made some of its own
appointments, most notably with the Congressional Black Caucus, both to
enlist their support of the legislation as well as to listen to their
concerns about incipient health care threats such as the proposed
extensive Medicaid cuts. To gain support of the nursing community, ANNA
met separately with American Nurses Association (ANA) Director of
Government Affairs, Rose Gonzalez, MPS, RN who also is a former board
member of the Hispanic Nurses organization; with Millicent Gorham,
Executive Director for the National Black Nurses Association (NBNA);
and with the NKF Congressional Relations Director, Monica Billinger,
RN, MPP.
Back to Basics
Half
a world away and 40 years later, I am still learning the basic lessons
of patient care. This intense experience of advocacy at its broadest
has underscored for me what Past President, the late Janel Parker,
predicted “ that, as the ESRD program enters a new millennium, the
nephrology nurse’s greatest challenge will be to adapt his/her expanded
role in delivering care to the renal disease patient” (Parker,
1998). However, the most powerful lesson I learned from this
experience at the nation’s Capitol about the care we give, came from
Redskins player, Randy Thomas, who told us how, as a young boy, he
would go with his Grandma to dialysis and the “nurses took care of her
just like she was family.” Funny how you have to go to the extreme to
understand and appreciate the basics.
Lesley C. Dinwiddie, MSN, RN, FNP, CNN
ANNA President
References
BParker
J. (1998). The End Stage Renal Disease Program. In J. Parker (Ed.),
Contemporary Nephrology Nursing (pp. 795-813) Pitman, NJ: American
Nephrology Nurses’ Association.
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