Estimating prognosis.
Article Type: Report
Subject: Prognosis (Methods)
Kidney diseases (Prognosis)
Nephrologists (Practice)
Author: Stilos, Kalli
Pub Date: 01/01/2010
Publication: Name: CANNT Journal Publisher: Canadian Association of Nephrology Nurses & Technologists Audience: Trade Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2010 Canadian Association of Nephrology Nurses & Technologists ISSN: 1498-5136
Issue: Date: Jan-March, 2010 Source Volume: 20 Source Issue: 1
Topic: Event Code: 200 Management dynamics
Geographic: Geographic Scope: Canada Geographic Code: 1CANA Canada
Accession Number: 223216280
Full Text: The author's purpose for this review article was to explore estimating prognosis within the context of end stage renal disease (ESRD); to present factors that prevent physicians from discussing this issue; and to review existing methods used for formulating a prognosis. The authors of the paper are Dr. Stephen M. Wittenberg from the Department of Medicine and Dr. Lewis M. Cohen from the Department of Psychiatry--both are from Baystate Medical Centre, Springfield, Massachusetts, U.S.A.


The authors draw our attention to American statistics, which indicate that 85,000 patients with end stage renal disease (ESRD) die every year, yet nephrologists commonly avoid discussions around prognosis. Research has found that dialysis patients want to know this pertinent information. In 2008, the National Kidney Foundation (Weiner, 2008) conducted an "online survey of 182 dialysis patients and found that: a) 54% of patient respondents had never talked about end-of-life care with a dialysis team member; b) 76% wanted to have such a conversation; c) only 14% expressed discomfort at the thought of having such a conversation; and d) only 5% clearly did not want to speak about these matters" (p. 165). In another survey undertaken by Fine, Fontaine, Kraushar, and Rich (2005) of 100 patients with chronic kidney disease, the researchers found that 97% of respondents wanted prognostic information and more than 50% of the respondents stated they needed to know their prognosis on dialysis. Large percentages wanted this information so they were "better prepared to accept what happens in the future" (p. 165) and believed that their nephrologists should volunteer that information and that they should not have to be prompted for it. Additional studies are cited to support this point.

The Renal Physicians Association and American Society of Nephrology clinical practice guidelines (2000) on initiation and withdrawal of dialysis suggest the issue of prognosis be discussed with patients, yet it is an area nephrologists fail to articulate. Reinforcing the need to have these discussions is the statistic that "one-and five-year mortality rates in ESRD are 25% and 60% respectively--considerably higher than that of most cancers" (p. 168). It has been recommended that further research be performed on estimating the prognosis of renal patients.

Many factors hinder end-of-life discussions. The review article focuses on three that are largely responsible for nondisclosure: a) lack of staff education and training, b) concerns about extinguishing patient hopes, and c) clinical uncertainty about the accuracy of prognoses.

Ensuring patients have an appropriate understanding of their illness, including prognosis, will only help patients and their families make informed decisions about their care and future goals.With the lack of training in communication in end-of-life care within the nephrology fellowship programs, it is not shocking that these discussions do not take place between physicians, patients and their families. Giving bad news to patients and their families in a patient-centred and culturally sensitive approach is not common to physicians' practice. Discussions like these need time, a quiet, private and comfortable place for the patient and their loved ones. To address this issue, the nephrology community is starting to include the topic of communication in their curriculum.

A concern for nephrologists is that by having discussions around prognosis, it may demoralize patients and their loved ones, causing them psychological distress. This review article references several studies that support open, ongoing dialogue about poor prognosis as a key factor in strengthening the patient-physician relationship and also to enhance patients' hope by shaping future decisions that are in line with their goals and values.

Another reason why nephrologists forgo discussions about prognosis is the lack of prognostic tools available that are generalizable, precise and useful. The Surprise Question (SQ) is an instrument that has been tested in the end stage renal disease (ESRD) population. This tool was used in the Moss et al. study (2008), which asked health care professionals whether they would be surprised if the patient died within one year. The findings from the study showed that "the unadjusted odds of dying within one year for the ESRD subject in the high-mortality group identified by the SQ were 3.5 times higher than for subjects in the low-mortality group" (p. 167). The authors of the study pointed out that having ESRD patients assess their own health condition might also be an independent predictor of death because these patients have insight into their quality of life, self-management behaviours and treatment compliance/non-compliance.

The method nephrologists use to formulate a prognosis includes: actuarial factors to estimate survival, taking into account age, albumin, activities of daily living (ADL) performance scales, hemoglobin variability, calcium, phosphorus, and parathyroid hormone (Mauri, Cleries, & Vela, 2008; Miskulin,Martin, & Brown, 2004). The modified Charlson Comorbidity Index (CCI) is a tool that predicts survival in both incident and prevalent dialysis patients--this tool factors in age and allocates a score to the various comorbid diseases (Fried, Bernardini, & Piraino, 2001; Fried, Bernardini, & Piraino, 2003). The Royal College of General Practitioners in the United Kingdom (2008) recommends both methods: the clinicians' prediction of survival, the SQ question, and actuarial estimation of survival, the CCI tool.

In addition, cardiovascular disease and, particularly, coronary artery disease (CAD) make up greater than 45% of deaths in ESRD patients (Johnston, Dargie, & Jardine, 2008). It is noted that CAD increases the odds of dying in an ESRD patient and the incidence of ESRD accelerates the onset and/or progression of CAD. It's also important to note the cardiac occurrences within the ESRD population--50% of the cardiovascular deaths in ESRD patients are usually unexpected and assumed to be due to arrhythmic events. These deaths could easily be linked to the following three conditions: hypertension with consequent left ventricular hypertrophy, coronary artery disease, and electrolyte imbalances. It is also noted that myocardial infarctions are difficult to assess in ESRD patients because of the biomarkers they use to detect this cardiac event. Values such as troponin T, troponin I and creatine kinase may be higher in the ESRD population.

Congestive heart failure (CHF) is another predictor of death in the ESRD population on dialysis. Stack and Bloembergen (2001) in their study found that 36% of ESRD patients on dialysis had CHF, and a Banerjee et al., 2007, study revealed an "8.7% mortality rate during the first hospitalization for CHF, and only 12.5% survival at five years in this population" (p. 168). Furthermore, the "biomarkers which may be predictive of cardiovascular mortality in dialysis patients have focused on the value of cardiac troponin T (cTNT) and cardiac troponin I (cTNI) (p. 168). Two studies are mentioned, Apple et al. (2002) and Khan et al. (2005), which indicate that these biomarkers are valuable, and evermore so when integrated into the clinical picture.

Open communication around prognosis among health care professionals, patients and their loved ones is vital for good palliative care and greatly influences the experience of dying. It is highlighted by the Canadian Hospice Palliative Care Association (CHPCA) (2002) that health care professionals need to work collaboratively to improve the quality of living, as well as the quality of end-of-life care for all Canadians. In addition, as part of the interprofessional team, nurses are in a position to influence physicians' communication skills and to provide support in communicating difficult issues more effectively. Adopting a team approach to communicating will not only ensure each member is supported, but also that nurses are better equipped in helping patients and their families understand, accept and adjust to the information, uncertainty and conflict that may arise when a prognosis is conveyed. Knowing what transpires during these discussions will also allow nurses to address patients' and their families' emotional reactions such as fear, anger and other ongoing concerns (CNA, 2008; Davis, Kristjanson, & Blight, 2003; McBride Robichaux & Clark, 2006).

The review article discussed prognosis, as it pertains specifically to the physician-patient relationship, excluding the nephrology nurse from this practice. Nephrologists continue to take on the primary role of communicating a prognosis to a patient and their loved ones when, in fact, nurses are capable of having such discussions. Yet, nurses do not take on that responsibility (Schulman-Green, McCorkle, Cherlin, Johnson-Hurzeler, & Bradley, 2005). The nurses' role is key to maximizing communication about prognosis so that relationships between health care providers, patients and families are strengthened. Many times after speaking with the physician, patients and their loved ones find themselves lost and unable to understand the information given to them. Nurses are in the forefront in the ongoing process that encourages patients and their families to discuss potential future treatment options, goals of care and end-of-life care, as it pertains to the patient's prognosis (CNA, 2008; McBride Robichaux & Clark, 2006).

In summary, the majority of patients and their loved ones would like to be informed of prognosis by their nephrologists. However, several barriers come into play when dealing with such difficult issues. Combining the clinician's prediction and the actuarial estimation of survival, including the cardiovascular indicators is promising for the ESRD population, so that it improves the process of decision-making and how it shapes their future.

Wittenberg, S.M., & Cohen, L.M. (2009). Estimating prognosis in end-stage renal disease. Progress in Palliative Care, 17(4), 165-169.

Reviewed by Kalli Stilos, RN, MScN, CHPCN(C), Advanced Practice Nurse, Palliative Care Consult Team, Sunnybrook Health Science Centre, Toronto, ON


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