Nephrology nurses' perspectives on difficult ethical issues and practice guideline for shared decision making.
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, 1990; 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, bur yet provided some direction and a universal approach to prescribing dialytic therapies across the United States. In 19!)8, 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 evidence-based 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 decision-making 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, 1990). However, in 1997, the RPA and ASN had developed a position statement on end-of-life care with recommendations for the nephrology healthcare 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 profession al 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 decisionmaking 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 decisionmaking 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-of life 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.
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.
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 decisionmaking 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 NR 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 p-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 p-value, 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). Ml 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.
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.
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 Certfication Commission's (NNCC s) continumq nursing education requirements for Certification and recertification.
Nephrology Nursing Journal Editorial 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 McFerland, MSN, RN. CNN, disclosed that she is ah employee of DaVita. Inc.
Karen C. Rohbins, 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.
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.
Alexander, S. (1962, November 9). They decide who lives, who dies. Life, pp. 102-125.
American Nephrology Nurses' Association (ANNA), Advanced Practice Special Interest Group. (2004). Advanced practice in nursing: Ethical and role issues in end-of-life care. Nephrology Nursing Journal, 31(1), 87-88.
American Nephrology Nurses' Association (ANNA), Ethics Committee. (n.d.). End-of-life decisions and the role of the nephrology nurse module 1: Techniques to facilitate discussion for advanced care planning. Pitman, NJ: ANNA. Retrieved September 15, 2007 from www.annanurse.org.
American Nurses Association (ANA). (2001). ANA code of ethics with interpretive statement. Silver Spring, MD: Author.
Briggs, L., & Colvin, E. (2002). The nurse's role in end-of-life decisionmaking for patients and families. Geriatric Nursing, 23(5), 302-310.
Brunier, G., Naimark, D., & Hladunewich, M. (2006). Meeting the guidelines for end-of-life care. Advances in Peritoneal Dialysis, 22, 175-179.
Cooper, M. (1998). Ethical decision making in nephrology for end-of-life care: A responsibility and opportunity. ANNA Journal, 25(6), 603-614.
Davison, S., Jhangri, G.S., Holley, J., & Moss, A. (2006). Nephrologists' reported preparedness for end-of-life decision-making. Clinical Journal of American Society of Nephrology, 1, 1256-1262.
Dinwiddie, L. (2003). Insight into the ESRD workgroup final report summary on end-of-life care. Nephrology Nursing Journal, 30(1), ,58-63.
Eller, S., & Miller, R. (2006), Withdrawal from dialysis: Palliative, compassionate care or patient suicide? Nephrology Nursing Journal, 33(5), 580-585.
Emanuel, E. (1988). A review of the ethical and legal aspects of terminating medical care. American Journal of Medicine, 84, 291-301.
Galla, J. (2000). Clinical practice guideline on shared decision making in the appropriate initiation of and withdrawal from dialysis. Journal of the American Society of Nephrology, 11(7), 1340-1342.
Hirsch, D., West, M., Cohen, A., &Jindal, K. (1994) Experience with not offering dialysis to patients with a poor prognosis. American Journal of Kidney Disease, 23, 463-466.
Holley, J., Davison, S., & Moss, A. (2007). Clinical Journal of American Society of Nephrology, 2, 107-111.
Kirk, L. (2005). Dialysis decisions: Should everyone be dialyzed? Nephrology Nursing Journal, 32(1), 96.
Kliger, A. (1998). Clinical practice guidelines and performance measure in ESRD. American Journal of Kidney Disease, 32(6), S173-S176.
Levinsky, N., & Rettig, R. (1991). Special report: The Medicare ESRD program. New England Journal of Medicine, 324, 1143-1148.
Lowance, D. (1993). Factors and guidelines to be considered in offering treatment to patients with end stage renal disease: A personal opinion. American Journal of Kidney Disease, 21, 679-683.
Lowance, D. (2002). Withholding and withdrawal of dialysis in the elderly. Seminars in Dialysis, 15(2), 88-90.
Mills, M., White, S., Kewrshaw, D., Flynn, J., Brophy, R, Thomas, S., et al. (2005). Developing clinical protocols for nursing practice: Improving nephrology care for children and their families. Nephrology Nursing Journal, 32(6), 599-606.
Moss, A., Rettig, R., & Cassel, C. (1993). A proposal for guidelines for patient acceptance to and withdrawal from dialysis: A follow up to the IOM report. ANNA Journal, 20, 557-617.
Moss, A., Stocking, C., Sachs, G., & Siegler, M. (1993). Variation in the attitudes of dialysis unit medical directors toward decisions to withhold and withdraw dialysis. Journal of the American Society of Nephrology, 4, 229-234.
Moss, A. (1995). To use dialysis appropriately: The emerging consensus on patient selection guidelines. Advances in Renal Replacement Therapy, 2(2), 175-183.
Moss, A. (2000). A new clinical practice guideline on initiation and withdrawal of dialysis that makes explicit the role of palliative medicine. Journal of Palliative Medicine, 3(3), 253-260.
Moss, A. (2001a). Shared decision-making in dialysis: A new clinical practice guideline to assist with dialysis related ethics considerations. Journal of Ethics, 12(4), 406-414.
Moss, A. (2001b). Shared decision making in dialysis: The new RPA/ASN guideline on appropriate initiation and withdrawal of treatment. American Journal of Kidney Disease, 37(5), 1081-1091.
Moss, A. (2001c). New guideline describes nephrology community consensus on withholding and withdrawing dialysis. Nephrology News & Issues, 15(11), 50, 55-56, ,57.
Moss, A., Holley, J., Davison, S., Dart, R., Germain, M., Lewis, C., et al. (2004). Core curriculum in nephrology, palliative care. American Journal of Kidney Disease, 43(1), 172-185.
Noble, H., & Kelly, D. (2006). Supportive and palliative care in end stage renal failure: The need for further research. International Journal of Palliative Care, 12(8), 362-364, 366-362
Payton, J., & Ceccarelli, C. (2006). Should dialysis be offered to all patients? Nephrology Nursing Journal, 33(4), 447-448.
Price, C. (1992). Is it time again for patient selection criteria? Nephrology News & Issues, 6, 18-20.
Price, C. (1998). Nephrology community initiative to develop guidelines for end-of-life care. ANNA Journal, 25(6), 573-578.
Price, C. (2003). Resources for planning palliative and end-of-life care for patients with kidney disease. Nephrology Nursing Journal, 30(6), 649-656, 664.
Prowant, B. (1996). Smoking cessation clinical practice guideline: Implication for nephrology nurses. ANNA Journal, 23(3), 272, 325.
Renal Physicians Association (RPA) & American Society of Nephrology (ASN). (1997). Position paper on quality care at the end of life. Rockville, MD: Renal Physicians Association.
Renal Physicians Association & American Society of Nephrology. (2000). Shared decision-making in the appropriate initiation of and withdrawal flora dialysis. Rockville, MD: Renal Physicians Association.
Renal Physicians Association (RPA) & American Society of Nephrology (ASN). (2002). Position paper on quality care at the end of life. Rockville, MD: Renal Physicians Association.
Rushton, C., Williams, M., & Sabatier, K. (2002). The integration of palliative care and critical care: One vision, one voice. Critical Care Nursing Clinics of North America, 14, 133-140.
Simard, J. (2001). Patient withdrawal and staff understanding: Two different staff perspectives. Nephrology Nursing Journal, 28(2), 251-252.
U.S. Department of Health and Human Services. (1993). End stage renal disease (ESRD) data advisory committee annual report. Washington, DC: Author.
U.S. Renal Data System (USRDS). (2006). Annual data report. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases. Retrieved September 15, 2007, from www.usrds.org
Note: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education article.
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, U77.
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. Table 2 Survey Tool for Nephrology Nurses' Perspectives on Difficult Ethical Issues 1. Does your workplace have a copy of the RPA/ASN Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis clinical practice guideline? YES NO DO NOT KNOW 2. Have you attended any continuing education program on the above guideline? YES NO DO NOT KNOW 3. Has the information in the above guideline been discussed at a staff meeting or inservice meeting for the patient care staff? YES NO DO NOT KNOW 4. Has this guideline been used as a reference in making a decision about a patient not initiating or withdrawing dialysis? YES NO DO NOT KNOW 5. Is patient survival discussed by the renal team before initiating dialysis? YES NO DO NOT KNOW 6. Is patient survival discussed by the renal team when a major change occurs in a patient's condition? YES NO DO NOT KNOW 7. Is patient quality of life measured with a specific questionnaire (tool, instrument) in your facility? YES NO DO NOT KNOW 8. Does a formal structure exist in you facility for identifying, discussing, and resolving conflicts regarding the benefit/burden of dialysis for an individual patient? YES NO DO NOT KNOW If you wish, you may explain how this happens 9. Do you have a consultant/expert in bioethics available to your facility when a bioethical decision making or ethical conflict occurs? YES NO DO NOT KNOW 10. Is completion of an Advance Directive (or other documents such as Living Will or Durable Power of Attorney for Health Care) discussed with your patients? YES NO DO NOT KNOW If so, when and by whom ? 11. Is completion of an Advance Directive, or other document, discussed with patient at regular intervals? YES NO DO NOT KNOW If so, when and by whom ? 12. Are time-limited trails of dialysis used for patients with an uncertain prognosis or for whom a decision has not been reached about long term dialysis therapy? YES NO DO NOT KNOW 13. Are patients who forgo dialysis or withdraw dialysis referred to palliative care/hospice services? YES NO DO NOT KNOW 14. Have one or more difficult or disruptive patients been discharged from your facility WITHOUT arrangements for dialysis at another facility? YES NO DO NOT KNOW 15. Have one or more difficult or disruptive patients been discharged WITH referral to another facility? YES NO DO NOT KNOW 16. Does you facility honor a patient's wishes for DNR or no CPR if a cardiopulmonary arrest occurs while the patient is receiving dialysis? YES NO DO NOT KNOW AS A NEPHRLOGY NURSE, I BELIEVE: 17. It is appropriate to withhold/withdraw dialysis from patients with acute renal failure (ARF) it they have irreversible, profound neurological impairment resulting in the lack of purposeful behavior and/or meaningful interaction with the environment. YES NO 18. It is appropriate to withhold/withdraw dialysis from patient with ESRD if they have irreversible, profound neurological impairment resulting in lack of purposeful behavior and/or meaningful interaction with the environment. YES NO 19. It is appropriate to withhold/withdraw dialysis for patients with ARF or ESRD who have a non-renal terminal disease. YES NO 20. It is appropriate to withhold/withdraw dialysis for patients when their medical condition prevents the routine technical delivery of dialysis. YES NO 21. It is appropriate to withhold/withdraw dialysis for patients who are elderly (> 85 yrs.). YES NO 22. It is appropriate to withhold/withdraw dialysis for patients who are very young (< 1 mo.). YES NO Table 3 Responses of Nephrology Nurses Compared to Nephrology Nurse Practitioners Involving Difficult Clinical Situations. Clinical situation: As a nephrology nurse, I believe: YES NO It is appropriate to withhold/withdraw dialysis RNs 77% 23% from patients with ARF if they have a irreversible, NPs 92% 8% profound neurological impairment. It is appropriate to withhold/withdraw dialysis RNs 80% 20% from patient with ESRD if they have irreversible, NPs 100% 0% profound neurological impairment. It is appropriate to withhold/withdraw dialysis RNs 64% 34% with ARF or ESRD who have a non-renal terminal NPs 69% 31 disease. It is appropriate to with dialysis for patients RNs 71% 29% when their medical condition prevents the routine NPs 67% 33% delivery of dialysis. It is appropriate to withhold/withdraw dialysis for RNs 35% 65% patients who are elderly (over 85 years old). NPs 8% 92% It is appropriate to with dialysis for patients RNs 38% 62% who are very young (under 1 month). NPs 8% 92%
|Printer friendly Cite/link Email Feedback|
|Author:||Rabetoy, Christy Price; Bair, Bradley C.|
|Publication:||Nephrology Nursing Journal|
|Article Type:||Clinical report|
|Date:||Nov 1, 2007|
|Previous Article:||Poverty close to home.|
|Next Article:||Fatigue in African American women on hemodialysis.|