Nephrology Nursing Journal January-February 2011 Vol. 38, No. 1 79

Nephrology Nursing Journal January-February 2011 Vol. 38, No. 1 79

End-of-Life Issues and the Patient with Renal Disease: An Evidence-Based Practice Project

On May 5, 2006, the Research/Innovations Committee of St.Joseph’s Hospital HealthCenter (SJHHC) in Syracuse, NY, sponsored one of several evi- dence-based practice workshops for staff nurses. Nurses attending the workshop were taught how to use the Iowa model of evidence-based prac- tice. The Iowa model was developed by Marita Titler and colleagues (2001) “…to describe knowledge transforma- tion and to guide implementation of research into clinical practice” (p. 497).

Attendees developed several ques- tions using this model. Nurses who cared for patients with end stage renal disease (ESRD) and who attended the workshop asked the question, “How can we assist our patients with ESRD with end-of-life issues?” The project described in this article was initiated to answer that question and has since evolved into an evidence-based prac- tice project. The question was found to be a problem-focused trigger, and more specifically, the identification of

a clinical problem. Following the Iowa model, a second question was raised: “Is this topic a priority for the organization?” The group agreed that it was a priority for the organization.

The Evidence-Based Practice Renal Project Team

The next task was to form a team. The Evidence-Based Practice (EBP) Renal Project Team was composed of eight nurses who care for patients with renal disease (from acute care hospital and outpatient settings) and several clinical nurse specialists with varied end-of-life care experience. As the project took shape, a physician champion (the nephrology medical director) was added to the team.

Pre-Assessment and Post-Assessment

Participants were asked to com- plete a survey before and after the ses- sion. The survey was a component of the American Nephrology Nurses’ Association (ANNA) Advanced Care Planning (ACP) Module – 1: End-of- Life Decision Making and the Role of the Nephrology Nurse (ANNA, 2004). The pre-assessment survey posed eight questions. The first four questions were true/false questions and asked about the nurses’ knowledge related to end- of-life. The last four questions asked about nurses’ experience and comfort level with end-of-life discussions.

Deborah J. Hopkins, MS, RN-BC, ACNS-BC, is a Staff Educator, St. Joseph’s Hospital Health Center, Syracuse, NY, and an Assistant Professor, St. Joseph’s College of Nursing, Syracuse, NY. She a member of ANNA’s Central New York Chapter and can be con- tacted via e-mail at deborah.hopkins@sjhsyr.org

Mary Rose Kott, MS, RN, ANP/CNS, CNN, is an Adult Clinical Nurse Specialist, Medical Services, and a Nurse Practitioner, Palliative Care Services, St. Joseph’s Hospital Health Center, Syracuse, NY, and is a member of ANNA’s Central New York Chapter.

Jean Pirozzi, BS, RN, CNN, is a Dialysis Nurse, St. Joseph’s Hospital Health Center, Syracuse, NY, and is a member of ANNA’s Central New York Chapter.

Denise Deppoliti, PhD, RN, PMHCNS-BC, is Director, Network Resource Education and Development, St. Joseph’s Hospital Health Center, Syracuse, NY.

Marty Pond, MS, RN-BC, CNS, is a Clinical Nurse Specialist, Geriatrics, St. Joseph’s Hospital Health Center, Syracuse, NY.

Copyright 2011 American Nephrology Nurses’ Association

Hopkins, D.J., Kott, M.R., Pirozzi, J., Deppoliti, D., Pond, M., Randolph, C., … Côté- Arsenault, D. (2011). End-of-life issues and the patient with renal disease: An evi- dence-based practice project. Nephrology Nursing Journal, 38(1), 79-83.

End-of-life issues affect everyone at some time. Individuals with chronic illness need to face these issues earlier to ensure their wishes are carried out. Patients with chronic kid- ney disease (CKD) Stage 5 have only three options: dialysis in its various forms, renal transplant, or death. In some cases, nurses who care for these patients feel they are caught between patients, their families, and the physician(s). Nurses want to help their patients but feel their hands are tied. The authors’ evidence-based practice renal project team worked to answer the questions of how nurses can assist patients with end-of-life issues. Do patients with CKD Stage 5 receive enough information on quality of life and end-of-life issues? The evidence showed that nurses are not comfortable discussing end- of-life issues with their patients. In response to these data, several educational sessions designed to give nurses tools needed to develop a comfort level when discussing end-of- life issues with their patients were completed.

Deborah J. Hopkins Mary Rose Kott Jean Pirozzi Denise Deppoliti

Marty Pond Connie Randolph Sandra Zajac Denise Côté-Arsenault

Connie Randolph, MS, RN, CNS, is a Clinical Nurse Specialist, Critical Care and Telemetry Services, St. Joseph’s Hospital Health Center, Syracuse, NY.

Sandra Zajac, MSLIS, is Manager, the College of Nursing and Medical Libraries, St. Joseph’s Hospital Health Center, Syracuse, NY.

Denise Côté-Arsenault, PhD, RNC, IBCLC, FNAP, is an Associate Professor, Brody Professor of Nursing, University of Rochester, Rochester, NY, and a Nurse Researcher (Consultant), St. Joseph’s Hospital Health Center, Syracuse, NY.

 

 

Nephrology Nursing Journal January-February 2011 Vol. 38, No. 180

Education Sessions The first step was to educate the

EBP Renal Project Team, followed by educating the nurses who care for patients with renal disease. This was accomplished with several four-hour teaching sessions.

During the first meeting of the EBP Renal Project Team, the team stressed the importance of the nurse having a direct impact on patients with renal disease. The ANNA ACP Module – 1 (ANNA, 2004), which had been developed by the ANNA Ethics Committee, was used to educate nurs- es who care for patients with renal disease, which is the purpose of the module. Although the module is available throughout the facility, it was not being used by nurses who

care for patients with renal disease. In addition, the physician champion also gave a brief presentation at the begin- ning of each session on the physi- cian’s perspective of the issue.

Each teaching session was com- posed of a one-hour lecture followed by 45 minutes of discussion in break- out groups; another hour of lecture and another 45 minutes of discussion in breakout groups rounded out the session. After each breakout session, participants came together as a large group to share what the smaller groups had discovered. At the end of the full session, each participant received a continuing nursing educa- tion certificate for three contact hours.

Eighteen nurses participated in the education programs. Results were collated from surveys completed

before and after each teaching ses- sion. Their experience with end-of- life planning discussions is shown in Figure 1. Over half (56%) had partici- pated in more than 10 discussions. The pre- and post-education knowl- edge of evidence results (see Table 1) revealed some improvement in responses after the teaching session, but the level of improvement was dis- appointing. There was a positive shift regarding participants’ knowledge about refusal to initiate dialysis, confi- dence in pursuing end-of-life discus- sions with patients, and familiarity with available end-of-life resources.

Nurses reported a variety of fears about initiating discussions. The six most frequent reported fears were: • Will the doctor disagree? • Will the patient believe his or her

condition is more imminent than he or she thinks?

• When the patient is on dialysis, the patient feels you are asking him or her to die.

• You don’t want to upset the patient and make him or her uncomfortable.

• Anger from family. • Anger from family directed at

you. Confidence in initiating and pursu-

ing discussions about end-of-life issues improved (see Figure 2), as did famil- iarity with resources (see Figure 3).

End-of-Life Issues and the Patient with Renal Disease: An Evidence-Based Practice Project

Figure 1 How many times have you participated in end-of-life planning

discussions with a patient?

Table 1 Pre- and Post-Education Knowledge of Evidence Results

True False

Pre-Test Post-Test Pre-Test Post-Test

Research shows that most people find discussions about life support and end-of-life planning upsetting.

15 (83%) 12 (67%) 3 (17%)* 6 (33%)*

Thirty percent (30%) of patients are unable to make their own healthcare decisions prior to death.

17 (94%) 12 (67%) 1 (6%)* 6 (33%)*

Healthcare proxies may consent to the removal of dialysis for a patient deemed not capable of making decisions.

16 (89%)* 17 (94%)* 2 (11%) 1 (6%)

It is unethical to refuse to initiate dialysis even when a patient with a terminal illness requests it.

11 (61%) 3 (17%) 7 (39%)* 15 (83%)*

* Indicates the correct answer.

0 1 2 3 4 5 6 7 8

More than 2011 to 206 to 100 to 5

 

 

Nephrology Nursing Journal January-February 2011 Vol. 38, No. 1 81

had a healthcare proxy, but it was not possible to tell if the education of nurses who care for patients with renal disease had influenced the com- pletion of the healthcare proxies. Consideration was given to do a qual- itative research study with the nurses. The nurse researcher pointed out it had been almost two years since the project began and at least a year since the last education session. The deci- sion was made to do a needs assess- ment survey of all nurses who care for patients with renal disease to deter- mine if the original question was still applicable. The IRB was contacted to ensure the exempt status for data col- lection was still applicable, which it was.

The survey consisted of three questions: • How many times have you partic-

ipated in end-of-life planning dis- cussions with a patient? The par- ticipants answered either 0 to 5, 6 to 10, 11 to 20, or more than 20.

• A few years ago, St. Joseph’s renal nurses stated they wanted to know how to help their patients with end-of-life issues. Is this true for you today? The participants answered either “yes” or “no.”

• Do you feel confident about initi- ating and pursuing discussions about end-of-life issues with patients? Participants answered “yes,” “no,” or “sometimes.” The survey was completed in

November 2008, and data showed the original question was still applica- ble. Of the 123 nurses who care for patients with renal disease who received surveys, 89 (72%) completed and returned them. Of those returned, 76 participants answered “yes” to the second question, indicat- ing that 85% of participants still desired knowledge on how to help patients with end-of-life issues. In addition, only 55 (38%) nurses answered “no” or “sometimes” to the third question, indicating they felt consistently confident about initiating or pursuing discussions about end-of- life issues with patients.

A literature search was conducted with assistance from the college of

0 1 2 3 4 5 6 7 8 9 10

1

2

3

4

5

6

7

PostPre

Figure 3 On a scale of 1 (not familiar) to 10 (very familiar), how familiar are

you with resources available to make end-of-life planning decisions?

0

1

2

3

4

5

6

Post

1 2 3 4 5 6 7 8 9 10

Pre

Figure 2 On a scale of 1 (not confident) to 10 (very confident), how do

you feel about initiating and pursuing discussions about end-of-life issues with patients?

Next Steps

It seemed more needed to be done to answer the original question. To help the EBP Team choose a course of action, the aid of a nursing research consultant within the facility was enlisted. With the consultant’s help, a

random sampling of patient charts was conducted at an outpatient dialysis center. In preparing for this, a letter was drafted to the Institutional Review Board (IRB) asking for exempt status for data collection, which was granted. Data were collected on July 29, 2008.

The majority of patients sampled

 

 

Nephrology Nursing Journal January-February 2011 Vol. 38, No. 182

nursing specialist in literature searches to prepare for the qualitative research study. Findings supported that ongoing end-of-life education is needed, and nurses need to feel comfortable initiat- ing discussions about end-of-life issues with patients. There were 22 articles and studies gathered from this litera- ture review, two of which had particu- lar relevance to this study. White, Coyne, and Patel (2001) did a descrip- tive survey in 1999 with oncology nurses. The sample size was 760, with a 33% return rate. One-third of the sample had less than or equal to two hours of education on end-of-life. The primary concern of these researchers was how to talk with patients and fam- ilies; a secondary concern was pain control (White et al., 2001). Nurses who care for patients with renal dis- ease involved in the project expressed similar concerns and backgrounds.

Black and Emmet (2006) per- formed a descriptive study on how nurses communicate information about advance directives with older patients who are hospitalized. They had a sample of 74 participants and a response rate of 27% (Black & Emmet, 2006). They listed several limitations, including the sampling design and self- reported behaviors, which possibly led to bias and errors in recall, and a low response rate (Black & Emmet, 2006). The results of this study indicate that communication practices are influ- enced by personal experience with advance directives, as well as years of experience and age (Black & Emmet, 2006).

It became apparent there was evi- dence that ongoing education was needed to answer the original ques- tion. Further education and tools were needed for nurses to feel comfortable initiating and pursuing end-of-life dis- cussions with their patients. The first step was a meeting with the clinical coordinators from all areas that care for patients with renal disease at SJHHC. A letter was then sent asking for volunteers to be in a video on end- of-life issues and the patient with renal disease. The coordinators suggested a video that would show the wrong way to talk with a patient and a better way

to talk with a patient. The goal of this education was to generate discussion and give nurses tools to help them be more comfortable initiating and pursu- ing end-of-life discussions with their patients.

The video was produced with sev- eral nurses who care for patients with renal disease and patient care techni- cians, and it was used along with the ANNA Advanced Caring Planning Module – 1 (ANNA, 2004) in a month-long series of in-services. Verification of the IRB exempt status was again con- firmed. Once the education was com- pleted, nurses were surveyed again to assess the effectiveness of the interven- tion. Of the 133 nurses who care for patients with renal disease in the SJHHC Network, 103 (77%) attended the staff education, and 72 (70%) returned the survey.

Results of this survey were very encouraging. The ANNA module plus video role playing was an effective educational approach. Sixty-seven of the 72 (93%) nurses and patient care technicians who returned surveys said the education was very helpful (17), helpful (32), or somewhat helpful (18). Thirty-two participants (44%) said they felt more confident about initiating and pursuing discussions about end-of- life issues with patients than they did before this education. Twenty-four par- ticipants (33%) said they sometimes felt more confident, and 14 (19%) said they did not feel more confident.

Conclusion The final meeting of the EBP

Renal Project Team was held January 6, 2010, with a sense that the question that began the project had been answered. A reference manual was assembled that contains the ANNA Advanced Caring Planning Module – 1 (ANNA, 2004), instructions on how to access online the video on end-of-life issues and the patient with renal dis- ease, and a pocket card with resources nurses can use when discussing end-of- life issues with their patients.

The EBP Renal Project Team real- izes that education alone may not help everyone become comfortable dis-

cussing end-of-life issues with patients. These reference manuals have been presented to all areas of the SJHHC network that care for patients with renal disease in the hope that the man- ual will serve as a tool to assist them in initiating and pursuing end-of-life dis- cussions with their patients.

References American Nephrology Nurses’ Association

(ANNA) Ethics Committee. (2004). Advanced care planning module – 1: End- of-life decision making and the role of the nephrology nurse. Pitman, NJ: Ameri can Nephrology Nurses’ Association.

Black, K., & Emmet, C. (2006). Nurses’ advance care planning communica- tion: An investigation. Geriatric Nursing, 27(4), 222-227.

Titler, M.G., Kleiber, C., Steelman, V., Rakel, B., Budreau, G., Everett, L.Q. … Goode, C. (2001). The Iowa model of evidence-based practice to pro- mote quality care. Critical Care Nursing Clinics of North America,13(4), 497-509.

White, K.R., Coyne, P.J., & Patel, U.B. (2001). Are nurses adequately pre- pared for end-of-life care? Journal of Nursing Scholarship, 33(2), 147-151.

Additional Reading Back, A.L., & Arnold, R.M. (2006).

Discussing prognosis: “How much do you want to know?” Talking to patients who do not want informa- tion or who are ambivalent. Journal of Clinical Oncology, 24(25), 4214-4217.

Back, A.L., Arnold, R.M., & Quill, T.E. (2003). Hope for the best, and pre- pare for the worst. Annals of Internal Medicine, 138(5), 439-444.

Buchman, T.G., Cassell, J., Ray, S.E., & Wax, M.L. (2002). Who should man- age the dying patient? Rescue, shame, and the surgical ICU dilem- ma. Journal of the American College of Surgeons, 194(5), 665-667.

Briggs, L.A., Kirchhoff, K.T., Hammes, B.J., Song, M.K., & Colvin, E.R. (2004). Patient-centered advance care planning in special patient pop- ulations: A pilot study. Journal of Professional Nursing, 20(1), 47-58.

Calvin, A.O. (2004). Haemodialysis patients and end-of-life decisions: A theory of personal preservation. Journal of Advanced Nursing, 46(5), 558-566.

End-of-Life Issues and the Patient with Renal Disease: An Evidence-Based Practice Project

 

 

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Cassell, J., Buchman, T.G., Streat, S., & Stewart, R.M. (2003). Surgeons, intensivists, and the covenant of care: Administrative models and values affecting care at the end of life – Updated. Critical Care Medicine, 31(5), 1551-1559.

Davidson, S.N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ, 333(7574), 886. doi:10.1136/bmj.389 65.626250.55

Duke, G., & Thompson, S. (2007). Knowledge, attitudes and practices of nursing personnel regarding advance directives. International Journal of Palliative Nursing, 13(3), 109-115.

Jezewski, M.A., Brown, J.K., Wu, Y.B., Meeker, M.A., Feng, J.Y., & Bu, X. (2005). Oncology nurses’ knowledge, attitudes, and experiences regarding advance directives. Oncology Nursing Forum, 32(2), 319-327.

Kaufman, S.R., Shim, J.K., & Russ, A.J. (2006). Old age, life extension, and

the character of medical choice. The Journal of Gerontology, 61(4), S175- S184.

Kaufman, S.R., Shim, J.K., & Russ, A.J. (2004). Revisiting the biomedicaliza- tion of aging: Clinical trends and eth- ical challenges. Gerontologist, 44(6), 731-738.

Kaufman, S.R., Russ, A.J., & Shim, J.K. (2006). Aged bodies and kinship matters: The ethical field of kidney transplant. American Ethnologist 33(1), 81-99.

Kirchoff, K.T., & Beckstrand, R.L. (2000). Critical care nurses’ perceptions of obstacles and helpful behaviors in providing end-of-life care to dying patients. American Journal of Critical Care, 9(2), 96-105.

Kuebler, K.K. (2001). Palliative nursing care for the patient experiencing end-stage renal failure. Urologic Nursing, 21(3), 167-178.

Norton, S.A., & Talerico, K.A. (2000). Facilitating end-of-life decision -mak- ing, strategies for communicating

and assessing. Journal of Gerontological Nursing, 26(9), 6-13.

Quill, T.E., Arnold, R.M., & Platt, F. (2001). “I wish things were different:” Expressing wishes in response to loss, futility, and unrealistic hopes. Annals of Internal Medicine, 135(7), 551-555.

Russ, A.J., & Kaufman, S.R. (2005). Family perceptions of prognosis, silence, and the “suddenness” of death. Culture, Medicine and Psychiatry, 29, 103-123.

Russ, A.J., Shim, J.K., & Kaufman, S.R. (2007). The value of ‘life at any cost’ – Talk about stopping kidney dialy- sis. Social Science Medicine, 64(11), 2236-2247.

Russ, A.J., Shim, J.K., & Kaufman, S.R. (2005). “Is there life on dialysis?” – Time and aging in a clinically sus- tained existence. Medical Anthropology, 24(4), 297-324.

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