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  . Pitman: Nov/Dec
2007. Vol. 34, Iss. 6; pg. 599, 8 pgs


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In general, patient selection for i


was based on age (6-55 years old), medical suitability
(no comorbid diseases), absence of other disabling diseases or conditions, likelihood for
vocational rehabilitation, psychiatric evaluation, availability of vacancy at the i

center,
and financial resources to pay for the treatment private funding or insurance (Alexander, 1962).
RPA members were encouraged to obtain a personal copy of the guideline for their private
library.\n However, this beginning attempt to gather information about nephrology nurses'
awareness to the RPA/ASN 2nd clinical practice guideline and their perceptions of some difficult
clinical situations does shed some light on the educational needs of nephrology nurses and NPs
regarding availability and application of the clinical practice guideline for assisting with patient
care and difficult  situations.

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Nephrologists and nephrology nurses have struggled with the technological, financial, and
ethical concerns surrounding the life sustaining treatment of hemodialysis for as long as this
treatment as been available. One of the overriding issues for the nephrology community has
been appropriate utilization of this technology and the appropriate restraint for prescribing
dialysis. Since the inception of dialysis, there has been discussion of guidelines for deciding
who should receive and who should not receive this therapy. In 2000, a clinical guideline was
developed to assist in directing the care of patients. The knowledge and acceptance of this
guideline by nephrologists has been researched in the past. However, there is no data of
knowledge and acceptance of the guideline by nephrology clinical nurses or nephrology nurse
practitioners. A survey was conducted to begin to ascertain this information in order to better
understand the perspectives of nephrology nurses.
Goal
To increase awareness of the nephrology nurses' need to be cognizant of the issues
surrounding end-of-life decisions to be made for those requiring hemodialysis.
Objectives
1. Outline the history of nephrology clinical guidelines and position statements relating to end-of-
life care in regards to the use of hemodialysis.
2. Relate the need for a shared decision making effort between health care workers, patients,
and families to be used when discussing end-of-life care.
3. Recommend strategies to increase the awareness of nephrology nurses to their role in
supporting nephrology patients and families struggling with end-of-life care decisions involving
hemodialysis use.

In the 1960s, clinical nephrology practice included the necessary referral of patients with end
stage renal disease (ESRD) who needed dialysis to "Death Committees" for patient selection
(Alexander, 1962). The lack of available financial resources, lack of appropriate equipment,
proximity to dialysis facilities, and insufficient number of physicians and nurses necessitated that
the decision for medical treatment be made by selection committees. The burden was
overwhelming on these committee members. In general, patient selection for dialysis was based
on age (6-55 years old), medical suitability (no comorbid diseases), absence of other disabling
diseases or conditions, likelihood for vocational rehabilitation, psychiatric evaluation, availability
of vacancy at the dialysis center, and financial resources to pay for the treatment (private
funding or insurance (Alexander, 1962).

With passage of PL 92-603 in 1972, the financial burden of dialysis and transplant shifted to the
U. S. taxpayer through the Medicare program, which made these therapies available to all
citizens, regardless of age, who were eligible for Social Security benefits and their dependent
children. The result was a rapid escalation of dialysis facilities, hemodialysis machines,
peritoneal dialysis systems, and transplant centers. Careers for nephrology physicians and
nurses took shape as these professionals delved into the care of individuals with chronic kidney
disease (CKD). CKD was the first, and remains the only, chronic disease funded by the
Medicare program. The ESRD population continues to grow at about 9% per year (USRDS,
2006). The cost of the ESRD Program to Medicare has far exceeded the projected annual cost
when the program was established in 1973.

Again in the early 1990s, some nephrologists and nephrology nurses began seriously
questioning the ethical dilemma and concerns surrounding the provision of dialysis therapies
with little or no consideration of the expense and benefit of such care. Professional journals
were publishing calls for guidelines to assist physicians in deciding who should receive dialysis
and the burden vs. the benefit of providing care for the mass of growing patients who needed
kidney replacement therapy (Hirsch, West, Cohen, & Jindal, 1994; Kliger, 1998; Lowance, 1993;
Moss, 1995; Moss, Rettig, & Cassel, 1993; Price, 1992; U.S. Department of Health & Human
Services, 1993). All of the nephrology organizations, including ANNA, expanded their
educational content at annual meetings to assist professionals with the difficult ethical dilemmas
they faced daily in their work environment. The ANNA Ethics Committee was formed during this
period. A greater emphasis was placed on the emotional and mental support for nephrology
nurses as they tackled the aging population with more comorbidities and more dependence on
the government payment system for their necessary care.

As the professional community struggled with the sicker, older ESRD population, interest arose
in reconsideration of clinical guidelines that were less restrictive than the criteria that the Death
Committees dealt with, but yet provided some direction and a universal approach to prescribing
dialytic therapies across the United States. In 1998, the Renal Physicians Associations (RPA)
proposed their second set of clinical guidelines to address the difficult ethical dilemma that
nephrology professional faced. Their first published clinical guideline on hemodialysis adequacy
had started to standardize the prescribing of treatment since 1993.

The RPA requested representation on the task force of all disciplines involved in the care of
patients with renal disease. The first author of this article, Christy Price Rabetoy, NP, and Helen
Danko, RN, MS, represented ANNA on the work group. The work group met over a period of 2
years and analyzed thousands of articles in a thorough review of the literature in order to
proceed with an initial approach for deciding a shared decision- making process between
providers and patients for recommending the appropriate initiation and withdrawal of dialysis.
Based on clinical evidence and expert opinion, the RPA published their second evidencebased
clinical practice guideline in 2000 (RPA & ASN, 2000). The final nine recommendations are
presented in the summary form (see Table 1). The basic premise supporting the guideline is
that a shared decisionmaking process between the health care providers and the patient or
family needed to be applied to all discussions about forgoing or withdrawing dialysis and
estimating prognosis. Patients need the information to make informed decisions about their
treatment options, including not pursuing life-sustaining procedures.

Nephrologists' Experience With Practice Guidelines

Prior to publishing of the RPA second nephrology clinical guideline, only the adequacy of
hemodialysis guideline had been distributed nationwide. The Institute of Medicine
recommended that the nephrology community establish a practice guideline as a means to
promote appropriateness of care (Levinsky & Rettig, 1991). During this period, an emerging
consensus agreed that an improved process for patient selection was necessary (Moss, 1995).
However, in 1997, the RPA and ASN had developed a position statement on end-of-life care
with recommendations for the nephrology health care team, including nurses, to increase their
education and skills related to the principles of palliative care (RPA & ASN, 1997). It was
revised in 2002 (RPA & ASN, 2002). Among other recommendations, this position statement
also called for improved policies, protocols, and programs to ensure advance care planning was
conducted with patients by the renal care team.

Emanuel (1988) had previously presented an excellent review of ethical and legal aspects of
terminating medical care, especially pertinent to nephrology by discussing who should be the
decision maker and defining ordinary vs. extraordinary care. Kliger (1998) addressed clinical
practice guidelines and performance measures in ESRD and encouraged the use of practice
guidelines to improve outcomes and refinement of the CQI process.

After the RPA/ASN guideline, "Shared Decision Making in the Appropriate Initiation and
Withdrawal of Dialysis," was completed, dissemination and discussion was widespread in the
medical professional literature (Galla, 2000; Lowance, 2002; Moss, 2000; Moss, 2001a; Moss,
2001b; Moss, 2001c). Additionally, many educational programs were organized to bring the
ethical issues in nephrology to the forefront. Copies of the guideline were distributed to
individual dialysis facilities by the largest national provider of dialysis treatments. RPA members
were encouraged to obtain a personal copy of the guideline for their private library. A Core
Curriculum in Nephrology for Palliative Care, was introduced that included content related to
ethical issues and the decision making regarding withholding and withdrawing dialysis (Moss et
al., 2004).

Since the introduction of this RPA/ASN guideline, studies have been completed comparing
American and Canadian nephrologists' perceived preparedness to make end-of-life decisions
and to determine factors related to their perceived preparedness (Davison, Jhangri, Holley, &
Moss, 2006). The questionnaire used for this study was similar to the one used to determine
nephrologists' attitudes and practices in end-of-life decision making (Moss, Stocking, Sachs, &
Siegler, 1993). A total of 360 nephrologists (296 American and 61 Canadian) responded to a
call to participate in an online survey. Several reminders were emailed to the membership of
RPA and the Canadian Society of Nephrology to encourage completion of the survey. The
findings indicated that nephrologists who were older, in practice longer, and were
knowledgeable of the RPA/ASN shared decision-making guideline reported a greater sense of
preparedness to make end-of-life decisions. They reported doing so more often in accordance
with the guideline recommendation as an independent predictor of their feelings of
preparedness. However, only approximately 50% of the respondents were aware of the
guideline. This led to the conclusion that further teaching in fellowship programs is necessary to
increase the comfort level of practicing nephrologists.

In 2007, Holley, Davison, and Moss analyzed the returns of the 296 American nephrologists
who completed the above survey with the 318 nephrologists who completed the similar survey
in 1990. Of particular interest, significantly more dialysis units had written policies on
cardiopulmonary resuscitation (CPR) and withdrawal of dialysis. In addition, nephrologists were
more likely to honor a patient's no CPR order. Results indicated that nephrologists' practices
related to end-of-life care have changed a great deal over the past 15 years, suggesting that the
development of the clinical practice guideline was worthwhile. Noteworthy for nephrology
nurses, nephrologists reported in this study that, when dealing with discontinuing dialysis on a
demented patient, 95% of them would consult with social workers and 92% would consult with
nephrology nurses. If a competent patient wished to stop dialysis, 86% of nephrologists would
consult with the unit social worker and 93% would consult with the unit nephrology nurses. The
conclusion was that from all the efforts in addressing end-of-life care, including the practice
guideline, patient care has advanced over the years.

Nephrology Nurses' Experience With Practice Guidelines

Nephrology nurses have always been concerned about end-of-life care needs of renal patients.
They have a long history of working directly with nephrologists in caring for the emotional and
physical needs of patients who chose to forgo dialysis, but more particularly with patients who
decide to discontinue dialysis. Nephrology nurses are often the first to become aware of a
patient or family's thoughts regarding stopping dialysis. However nephrology nurses have not
generally employed practice guidelines in their nursing interventions. There has been a practice
guideline for smoking cessation that nephrology nurses have been encouraged to adopt in their
daily practice (Prowant, 1996). Cooper (1998) did address the ethical significance of focusing on
end-of-life decision making for patients with ESRD and the nurse's role as a patient advocate.
Price (1998) addressed initiatives of the nephrology community in developing guidelines for
end-of-life care and ethical decision making as an opportunity and responsibility for nephrology
nurses. A national leadership work group, which included ANNA representation, worked
together to propose an agenda for the nursing profession on end-of-life care (Rushton, Williams
& Sabatier, 2002).

The American Nurses Association's (ANA's) Code of Ethics with Interpretive Statements serves
as an ethical basis for all nursing practice (ANA, 2001). Considerable work has been done in
outlining the nurse's role in end-of-life decision making and advanced care planning by defining
nursing competencies (Briggs & Colvin, 2002). ANNA was well represented on the ESRD
Workgroup funded by the Robert Wood Johnson Foundation, which produced a summary report
on recommendations for improving palliative care in the ESRD population (Dinwiddie, 2003).
Clinical protocols for improving patient outcomes have been utilized by nephrology nurses and
shared in publication, but these are not the same as evidence-based practice guidelines that are
accepted by the nephrology community at large (Mills et al., 2005).

Since the dissemination of the RPA/ASN practice guideline in 2000, there has been more
discussion in nephrology nursing journals about end-of-life care. The first publication in a
nephrology journal referring to the RPA/ASN practice guideline was a case study report of a
competent middle- aged woman who decided to withdraw from hemodialysis after consultation
with members of the renal care team (Simard, 2001). Available resources, including the
RPA/ASN practice guideline, have been presented to assist nephrology nurses in developing a
therapeutic plan of care (Price, 2003). The role of nephrology nurses in participating in end-of-
life care and advanced care planning for patients with ESRD was outlined to ease the
implementation of the practice guideline. The ANNA Advanced Practice Special Interest Group
(SIG) (2004) addressed the ethical and role issues of nurse practitioners in end-of-life care
planning, again with the goal of improving patient outcomes.

The RPA/ASN practice guideline was referenced and a study completed to see if the guideline
was being met in an elderly population of patients with ESRD, all being over 80 years of age
(Brunier, Naimark, & Hladunewich, 2006). Data showed that 92% of the patients did not have a
do not resuscitate order in place, 46% voluntarily withdrew from dialysis, and 71% died in the
hospital. The authors indicated that in this cohort of patients, end-oflife care could definitely be
improved, especially access to palliative care measures.

Debate continues in nephrology nursing as to the appropriate use of dialysis therapies. There
has been discussion of whether everyone should be offered dialysis (Kirk, 2005; Payton &
Ceccarelli, 2006). Questions continue to arise on the appropriateness of withdrawal of dialysis
as a patient choice (Eller & Miller, 2006). The issues surrounding end-of-life care for patients
with ESRD are not limited to the practice in the United States. The RPA/ASN practice guideline
has served as a reference and guide to provide supportive and palliative care internationally, but
the need continues to exist for further research to provide more effective care by nephrology
practitioners (Noble & Kelly, 2006).

Development of The Nephrology Nurses' Perspectives on Difficult Ethical Issues Survey Tool

In 2003, the ANNA Ethics Subcommittee chaired by Elaine Colvin, RN, BSN, MEPD, started the
development of a survey tool to better assess the ANNA members' understanding of the
RPA/ASN practice guideline. It was clear to the committee that nephrology nurses needed
educational assistance for developing programs addressing advanced care planning for
patients. Additionally, since ANNA had participated in the development of the RPA/ASN practice
guideline, the committee wanted to know what impact had been made on changes in nurses'
behavior related to end-of-life care. The survey tool (see Table 2) was further developed over
the next year by a panel of expert nephrology nurses to include nephrology nurses' perceptions
on some difficult ethical issues that were being discussed in the literature as well as in national
meetings. The survey tool was designed to gather initial data on nephrology nurses' awareness
of the guideline and particular elements of the guideline. These include appropriate renal team
discussions, completion of advance directives by patients, use of time- limited trails for dialysis,
handling of situations involving disruptive or difficult patients, and honoring patients' wishes
regarding no CPR or DNR status while receiving dialysis. Additionally, the survey included
questions regarding nephrology nurses' beliefs about clinical situations involving forgoing or
withdrawing dialysis. A limitation of the study is the tool was not formally tested for reliability or
validity, however, a panel of expert nephrology nurses agreed on the content and design.

Methodology

Approval for the study was obtained by the Institutional Review Board at the University of Utah.
The survey was mailed to 300 clinical nephrology nurses and 100 nephrology nurse
practitioners (NPs). Criteria for participation were a minimum of a BSN degree for clinical
nephrology nurses and MSN degree for the nephrology NPs. The total population of nephrology
nurses and nephrology NPs is unknown, but ANNA has over 12,000 members from which the
participants were randomly selected. The participants were given the option of returning the
survey by mail or on an online website set up to process their responses. Four weeks after the
original mailing, every participant was sent a postcard as a reminder to complete the survey. All
of the responses that were returned by mail were entered into the online Survey Monkey tool so
the total data could be analyzed. Analysis of the data was completed with the assistance of a
statistician from the University of Utah.

The goals of the survey were to ascertain the knowledge of nephrology nurses and nephrology
NPs about the existence of the RPA/ASN clinical guideline, to explore the extent of the
application of the guideline in their daily clinical practice, and to explore the nurses' views and
perceptions on some of the individual recommendations of the guideline. It was anticipated that
there would be some differences between and within the study groups. It was expected the
nephrology NPs would be more aware of the guideline, and they would be applying its
recommendations in their clinical practice.

Findings

Fifty (50) of the invited participants completed the survey for a response rate of 12.5%. Thirty
seven (37) were clinical nephrology nurses and the remaining thirteen (13) were nephrology
NPs. The years of nephrology nursing experience ranged from 6 months to 31 years, and the
years of nursing experience ranged from 8 to 46 years. The vast majority of participants had
been practicing in nephrology nursing and/or nursing for over 15 years.

The questions addressing the participants' awareness of the RPA/ASN 2nd clinical practice
guideline, Shared Decision Making in the Appropriate Initiation and Withdrawal of Dialysis,
revealed that only 8% had a copy in their workplace, 48% claimed no copy in their workplace,
and 44% did not know. Only 12% had attended any continuing educational programs on this
guideline. Few nurses were aware of the guideline being used to direct patient care. There were
essentially no differences in the responses between the clinical nurses and the NPs.

Regarding patient survival information, 24.5% indicated that patient survival was discussed with
patients by the renal team before the initiation of dialysis, 53% denied discussions, and about
22% did not know. Only 56% indicated that survival was discussed with the patient after a major
change in health status, while 30% denied discussions and 14% did not know. Of the
nephrology NP respondents, 55% had discussed survival with patients prior to the initiation of
dialysis and 83% discussed patient survival after a major change in the patient's clinical status.
Somewhat encouraging, 40% of the participants indicated they had the availability of a
bioethicist to assist with decision making or when an ethical conflict occurs. Only 12% measured
quality of life with a specific questionnaire on any routine basis.

Although much work has been done by the ESRD Networks, the responses show that 23% of
the participants knew of situations involving patients being discharged from a dialysis unit
without arrangements for dialysis at another facility. On the other hand, 65% of the participants
indicated discharge of patients from a dialysis unit with referral to another dialysis facility.

Completion of advance directives was discussed with patients by 92% of the participants;
however, overwhelmingly the discussion was between the patient and the facility social worker,
not the nephrology nurse or nephrology NP. There was little consistency of when advance
directives were discussed, with the range being from the patient's first dialysis treatment to
sometime in the first week or month of treatment. Advance directives were reviewed routinely
with patients either biannually or annually. Approximately 70% of the clinical nurses reported
that patients were referred to palliative or hospice care if they decided to forgo or withdraw
dialysis. However, 100% of the NPs indicated referrals were made. Approximately 83% of the
nurses claimed patients' wishes for DNR or no CPR were honored while the patient was
receiving dialysis, but 8% indicated these patient choices were not followed while the patient
was receiving dialysis. Use of time limited trials were reported by 24.5% of the study group.

Table 3 shows the findings regarding the beliefs of nephrology nurses and the nephrology NPs
on specific difficult patient situations. Considerable differences of opinion continue to exist
amongst nephrology nurses regarding the prescribing of dialysis for the very elderly (over 85
years old) and very young (under 1 month of age). The NPs seemed more assured in their
decisions regarding prescribing dialysis for these populations of patients. Some nurses remain
uncomfortable with withholding and withdrawing dialysis for patients with irreversible, profound
neurological impairment, even when the patient lacks purposeful and/or meaningful interaction
with the environment. The data also indicates that nephrology nurses remain uncomfortable with
withholding or withdrawing dialysis for a patient with a nonrenal terminal disease.

The participants had the opportunity to add personal comments along with answering the
questions. The questions regarding possible difficult clinical situations (see Table 3) generated
the most written responses. Several written comments indicated any decision to withhold or
withdraw dialysis rested solely with the patient and family: "they are the decision makers."
However, there were other comments indicating the frustration of nephrology nurses has not
changed much over the years (i.e., "we dialyze the dead, 90 year olds, cancer patients, liver
failure patients."). In order to ascertain whether experiences in general nursing and/or
nephrology nursing were related to the response category (yes/no), inferential statistical
analysis was performed on the data. Kruskal- Wallis' nonparametric analysis was used due to
possible violations of the assumptions associated with a t-test. Responses that were missing or
indicated as "I do not know" were excluded from the analysis. The categories of "yes" or "no"
were then tested to see if the distributions of clinical experience in both categories were
homogeneous. If the test results in a significant pvalue, then the conclusion that a clinical
experience is different for the two responses can be drawn. Under this result one can conclude
that either more experienced or less experienced nurses are more likely to answer in a specific
way. Contingency table analysis using specific cutpoints for clinical experience was
investigated, along with t-tests, as possible ways to test for the relationship of interest. Both
methods yielded similar results to the Kruskal- Wallis analysis.

There were few statistically significant findings for the study. From the demographic data related
to years in nursing and nephrology nursing, there was a trend towards significance (P = .09 and
P = .07) regarding discussions about patient survival after a major change in a patient's clinical
condition. It appears that clinical experience did make some difference in the approach to
talking with patients. Again with more clinical experience in nursing and nephrology nursing (P =
.09 and P = .06), there was a trend to refer patients to palliative and hospice care if the patients
chose to forgo or withdraw dialysis. The findings did reach significance related to the
participants' beliefs and clinical experience of the appropriateness of withholding or withdrawing
dialysis for patients when their medical condition prevented the routine technical delivery of
dialysis (P = .03). All participants with more years of experience in nursing and nephrology
nursing indicated that it was appropriate to withhold or withdraw dialysis when the patient's
medical condition prevented the routine delivery of dialysis.

Discussion and Recommendations

The small sample size for the study population limits any generalization of the findings to current
clinical nephrology practice. As previously stated, there are limitations regarding the use of the
survey tool. Additionally, since the study participants were randomly drawn from the
membership list of ANNA, the findings may not reflect those practicing nurses who are not
members of ANNA.

However, this beginning attempt to gather information about nephrology nurses' awareness to
the RPA/ASN 2nd clinical practice guideline and their perceptions of some difficult clinical
situations does shed some light on the educational needs of nephrology nurses and NPs
regarding availability and application of the clinical practice guideline for assisting with patient
care and difficult ethical situations.

Although the nurses may not feel they are the ultimate decision makers when withholding or
withdrawing dialysis is an issue, it was pointed out in the studies by Holley et al. (2007) that
nephrologists do seek nurses' input when dealing with these clinical situations. If nephrology
nurses and nephrology NPs are not familiar and comfortable with the RPA/ASN guideline, their
clinical participation and judgment may only have limited influence on patient outcomes. Nurses
may not be able to fulfill their role as patient advocates. Furthermore, it is disappointing that the
data indicate that the unit social worker is primarily responsible for assisting patients with
discussion and completion of advance directives. Nephrology nurses, as important members of
the renal care team, need to be involved in patient discussions of advance directives,
withholding and withdrawing dialysis, and palliative or hospice care.

The ANNA Ethics Committee (n.d.) developed an End-of-Life module to foster the nurses' role in
these discussions. This module includes a PowerPoint presentation, presenter script, pre-
assessment survey, and participant handout.

Hopefully, future research will show a more active nursing role. It does seem that more patients
are now being offered the services of palliative and hospice care, possibly related to the
increased educational programming and literature within ANNA on these resources. Although
only a small percent (8%) of the survey respondents reported that their facilities do not
recognize a no CPR order during dialysis, all dialysis facilities need to recognize a patient's
wishes to not be resuscitated while receiving dialysis. All facilities should review their policies on
honoring patients' advance directives, particularly a DNR or no CPR order. Honoring advance
directives is clearly stated in Recommendation # 5 of the RPA/ ASN 2nd clinical practice
guideline.

On another note, it appears from the survey results that the discharge of patients from dialysis
units continues to occur with and without appropriate referrals. Additional research or data
collection should focus on the difficult or disruptive patient behaviors that are driving discharges
from dialysis clinics. The extent of the problem is truly unknown.

Conclusion

In conclusion, it is apparent that more emphasis is needed on the application of evidence-based

guidelines in general, and, in particular, the RPA/ASN 2nd clinical practice guideline, Shared
Decision Making in the Appropriate Initiation and Withdrawal of Dialysis. From the existing
medical and nursing literature, nephrologists and nephrology nurses need to increase their
awareness, knowledge, and possibly their comfort level with difficult, ethical patient care
situations. It will benefit nephrology professionals and patients if the professional organizations
(i.e., ANNA, RPA, and ASN) continue their collaborative, collegial working relations with the goal
of improving palliative and end-of-life care for patients with kidney disease.

ü
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This offering for 1.5 contact hours is being provided by the American Nephrology Nurses'
Association (ANNA).
ANNA is accredited as a provider of continuing nursing education (CNE) by the American
Nurses Credentialing Center's Commission on Accreditation.
ANNA is a provider approved by the California Board of Registered Nursing, provider number
CEP 00910.
This CNE article meets the Nephrology Nursing Certification Commission's (NNCC's) continuing
nursing education requirements for certification and recertification.
Nephrology Nursing JournalEditorial Board Statements of Disclosure
Paula Dutka, MSN, RN, CNN, disclosed that she is a consultant for Hoffman-La Roche and
Coordinator of Clinical Trials for Roche.
Patricia B. McCarley, MSN, RN, NP, disclosed that she is on the Consultant Presenter Bureau
for Amgen, Genzyme, and OrthoBiotech. She is also on the Advisory Board for Amgen,
Genzyme, and Roche and is the recipient of unrestricted educational grants from OrthoBiotech
and Roche.
Holly Fadness McFarland, MSN, RN, CNN, disclosed that she is an employee of DaVita, Inc.
Karen C. Robbins, MS, RN, CNN, disclosed that she is on the Speakers' Bureau for Watson
Pharma, Inc.
Sally S. Russell, MN, CMSRN, disclosed that she is on the Speakers' Bureau for Roche/Abbott
Labs.

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i 
Table 1
Summary of Recommendations from the Practice Guideline "Shared Decision-Making in the
Appropriate Initiation of and Withdrawal from Dialysis"
Recommendation 1. Shared decision making - The patient-physician relationship should involve
shared decision making at a minimum with the physician and may include other member of the
renal care team.
Recommendation 2. Informed consent or refusal - Physicians should fully explain the diagnosis,
prognosis and all treatment options. The renal care team should insure that the patient
understands the information and consequences of the decision.
Recommendation 3. Estimating prognosis - Patients should be informed about the prognosis of
their chronic kidney disease, including a reasonable estimate of survival.
Recommendation 4. Conflict resolution - When disagreement exists between patients or their
families and/or member of the health care team about the benefit of dialysis, dialysis should be
provided while pursuing conflict resolution.
Recommendation 5. Advance directives - The renal care team should attempt to obtain written
advance directives from all patients on dialysis. Advance directives should be honored.
Recommendation 6. Withholding or withdrawing dialysis - It is appropriate to withhold or
withdraw dialysis if a patient with decision making abilities refuses treatment; if a patient who is
not longer able to make decisions indicated refusal of dialysis in the past; if the legal agent of
the patient refuses or requests discontinuing dialysis when the patient no longer possess
decision making capacity; if a patient has a irreversible, profound neurological impairment and
lacks purposeful behavior.
Recommendation 7. Special patient groups - It is reasonable to consider withholding or
withdrawing dialysis for patients who have a terminal nonrenal disease, or whose medical
condition prevents the technical process of dialysis.
Recommendation 8. Time limited trials - Where an uncertain prognosis exists for when
consensus can not be reached, the physician should offer a time limited trial of dialysis.
Recommendation 9. Palliative care - All patients who forgo or withdraw dialysis should be
offered a referral for palliative and hospice care.
Source: RPA/ASN, 2000.

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ü 
 Christy Price Rabetoy, NP, is Nephrology Nurse Practitioner, Salt Lake City, UT. She has
served as a member of the Nephrology Nursing Journal Editorial Board for many years and is a
Past President of ANNA. She is also a member of ANNA's Intermountain Chapter.
Bradley C. Bair, MS, MStat, is Senior Data Analyst/Biostatitician, Division of Nephrology and
Hypertension, University of Utah School of Medicine, Salt Lake City, UT.
Acknowledgment: The authors would like to recognize the members of the ANNA Ethics
Committee who worked to develop the survey tool used for this study: Kitty Richardson, Denise
Murcek, Chris Ceccarelli, Mary Rose Kott, Glenda Harbert, Debra Castner, and Elaine Colvin.
The authors would also like to thank the American Nephrology Nurses' Association and
Nephrology Nursing Journal for funding of this survey.
Note: The authors reported no actual or potential conflict of interest in relation to this continuing
nursing education article.

ë   


? References (40)

 #  

!

 
 Decision making, Hemodialysis, Hospitals, Palliative care, Clinical
medicine, Vocational rehabilitation, Health care policy, Medical ethics,
Disease, Chronic illnesses, Nephrology


 
 Advance Care Planning -- ethics, Attitude of Health
Personnel (major), Cooperative Behavior, Decision Making --
ethics(major), Health Knowledge, Attitudes,
Practice, Humans, Interprofessional Relations -- ethics, Nephrology --
education, Nephrology -- ethics, Nephrology -- organization &
administration, Nurse Clinicians -- education, Nurse Clinicians --
ethics, Nurse Clinicians -- psychology, Nurse Practitioners --
education, Nurse Practitioners -- ethics, Nurse Practitioners --
psychology, Nurse's Role, c 
 Methodology Research, Patient
Selection -- ethics (major), Practice Guidelines as Topic (major), Practice
Guidelines as Topic -- standards, Professional-Patient Relations --
ethics, Questionnaires, Referral & Consultation -- ethics, Renal 

--
ethics (major), Renal 

--  
, Renal

--
utilization, Societies, c 
, Specialties, c 
 --
education, Specialties, c 
 -- ethics(major), Specialties, c 
 --
organization & administration, Terminal Care -- ethics, United
States, Withholding Treatment -- ethics
 
 Christy Price Rabetoy, Bradley C Bair
  Christy Price Rabetoy, NP, is Nephrology Nurse Practitioner, Salt Lake City,
 UT. She has served as a member of the Nephrology Nursing Journal
Editorial Board for many years and is a Past President of ANNA. She is also
a member of ANNA's Intermountain Chapter.
Bradley C. Bair, MS, MStat, is Senior Data Analyst/Biostatitician, Division of
Nephrology and Hypertension, University of Utah School of Medicine, Salt
 Lake City, UT.
Acknowledgment: The authors would like to recognize the members of the
ANNA Ethics Committee who worked to develop the survey tool used for this
study: Kitty Richardson, Denise Murcek, Chris Ceccarelli, Mary Rose Kott,
Glenda Harbert, Debra Castner, and Elaine Colvin. The authors would also
like to thank the American Nephrology Nurses' Association and Nephrology
Nursing Journal for funding of this survey.
Note: The authors reported no actual or potential conflict of interest in
relation to this continuing nursing education article.
   Tables, References
  


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 Journal. Pitman: Nov/Dec 2007. Vol. 34, Iss. 6; pg.
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