The Ethics of End-of-Life Care for Patients with ESRD : Clinical Journal of the American Society of Nephrology

Journal Logo

Ethics Series

The Ethics of End-of-Life Care for Patients with ESRD

Davison, Sara N.

Author Information
Clinical Journal of the American Society of Nephrology 7(12):p 2049-2057, December 2012. | DOI: 10.2215/CJN.03900412
  • Free

Abstract

To cure sometimes, to relieve often, and to comfort always—this is our work. This is the first and great commandment. And the second is like it. Thou shalt treat thy patient as thou wouldst thyself be treated.

Anonymous

Approximately 90,000 dialysis patients die each year in the United States, with a high annual unadjusted mortality rate of approximately 20% (1). The exact numbers of patients with ESRD who die without starting dialysis are unknown but estimated to be several fold higher. As of December 31, 2009, there were 397,796 people in the United States on dialysis (1). The prevalent population ages 75 years and older is the largest growing group, having nearly doubled since 1997 (1).

Patients with ESRD experience an extremely high burden of symptoms similar to those symptoms of cancer patients hospitalized in palliative care settings (28), and they have extensive and unique palliative care needs, often for years before death (9,10). Dialysis patients are more frequently dying after withdrawal of dialysis (10%–15% in 1990 and 20% in 2004) (1), representing the second leading cause of death after cardiovascular disease. Unfortunately, most patients lack decision-making capacity at the time that the decision to withdraw dialysis is made and are not involved in these decisions (11). Most dialysis patients do not have an advance directive and have not had discussions with their family or health providers about their end-of-life care preferences (10), despite patients wanting to engage in these conversations (10,12). Even patients with advance directives often do not address health states in which they would no longer wish to continue dialysis (13,14). Only a minority of patients chooses to forgo cardiopulmonary resuscitation (10,15), because they are unaware of the poor likelihood of survival after cardiopulmonary resuscitation (16). Without advance care planning (ACP), neither family nor physicians is accurate in their predictions of patients’ desires about life-sustaining treatments, including wishes for ongoing dialysis (17).

Although palliative care is recognized as a basic human right (18), the vast majority of ESRD patients die in acute care facilities without accessing palliative care services (19), despite indicating preferences for home death (10). Dialysis patients≥65 years old have very high rates of hospitalization, intensive care unit admission, and intensive procedures in the final month of life, with care being more aggressive than the care reported for cancer and heart failure patients (20). Poor-quality hospitalized deaths began to improve for patients dying with cancer as a result of an increasing emphasis on providing palliative care. Similar systematic attention has not yet been paid to patients dying with ESRD. This article will provide a conceptual framework for renal palliative care and describe opportunities for enhancing palliative care for ESRD patients, including improved chronic pain management and ACP and a new model for delivering high-quality palliative care that includes appropriate consultation with specialist palliative care.

A Conceptual Framework for Renal Palliative Care

What Is Palliative Care?

There have been several transitions in terminology relating to care near the end of life from hospice and terminal care in the early phases of the hospice movement in the United Kingdom and end-of-life care, which is now widely used in North America, to palliative care. More recently, supportive care has emerged as a popular term to describe noncurative treatments for both cancer and noncancer patients (21). As a result, there is tremendous confusion about what constitutes palliative care. This review focuses on palliative care as defined by the World Health Organization. “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (22). This process of care affirms life and regards dying as a normal process; it intends to neither hasten nor postpone death. It offers a support system to help patients live as actively as possible until death, it enhances quality of life, and it may also positively influence the course of illness. Palliative care principles should be applied on diagnosis of ESRD (Figure 1). Physical, psychosocial, and spiritual symptom management would come into the care plan, as needed, in support of other therapies, such as chronic dialysis, that are intended to prolong life. In this way, palliative care becomes a gradual and normal transition within the care process.

F1-20
Figure 1:
Integration of palliative care within the care process.

Clinical Practice Guidelines for Renal Palliative Care

There is growing international interest in a comprehensive analysis of the evidence around renal palliative care to develop global guidelines for implementation of renal palliative care. This analysis would help improve worldwide practice, referral, and overall access to palliative care services for patients with ESRD. At this time, however, there are no formal standards to inform how to best deliver and assess renal palliative care. As a preliminary step, the Renal Physicians Association recently updated the clinical practice guideline, Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis, to assist nephrologists, patients, and families in reaching decisions on whether to initiate or stop dialysis (23). Nephrologists who are knowledgeable of this guideline report greater preparedness to make end-of-life decisions (24). The American Society of Nephrology recently identified shared decision-making between patients, their families, and their physicians when initiating chronic dialysis as one of the top five priorities for ensuring quality patient care. These guidelines include recommendations for the provision of renal palliative care, including elicitation of patient goals and preferences, and discussion of prognosis and expected benefits and harms of dialysis within the context of patients’ goals and preferences (25). The United Kingdom has implemented a national strategy for renal palliative care that focuses on timely ACP and appropriate linking of renal care with the primary care community and palliative care services (26). However, considerable variation in the provision of palliative care remains, and most nephrologists still feel insufficiently prepared to deal with the numerous end-of-life challenges inherent in the care of their patients (24,27). With the increasing awareness of the need for a more systematic approach to renal palliative care, a framework (Figure 2) is emerging, predominantly in Canada and the United Kingdom, to guide and support health professionals, patients, and families throughout patients’ illness with ESRD (28).

F2-20
Figure 2:
End-of-life care framework for patients with ESRD.

Identifying ESRD Patients Most Likely to Benefit from Palliative Care Services

ESRD patients at highest risk of early death or patients with the most suffering, whether physical, psychosocial, or spiritual, are likely to obtain the greatest benefit from palliative care services. A successful renal palliative care program will depend, in part, on the ability to successfully identify these patients. The following discussion includes two areas in which palliative care services would be indicated, chronic pain management and ACP, and it will address strategies to help identify patients in need of these services.

Improving Palliative Care for ESRD Patients

Chronic Pain Management in ESRD

Chronic pain is experienced by approximately 50% of ESRD patients, with 82% of patients reporting this pain as moderate or severe in intensity (29). Pain has devastating effects on ESRD patients’ quality of life (5,30,31), with symptom burden accounting for up to 39%–46% of the impairment in health-related quality of life (4,5,30). Unfortunately, pain and other symptoms are typically not recognized by renal clinicians (32) and remain undertreated. Routine symptom assessment is, therefore, integral to quality ESRD care.

Three global symptom screening tools have been validated in ESRD: the modified Edmonton Symptom Assessment System (4,5,30), the Patient Outcome Scale renal symptom module (33), and the Dialysis Symptom Index (34). Renal programs in Canada and the United Kingdom are currently using the Edmonton Symptom Assessment System and Patient Outcome Scale, respectively, to systematically identify ESRD patients who may benefit from interventions. Given the minimal burden to patients and staff, assessments can be completed by patients with nurse facilitation routinely during clinic visits for predialysis and home dialysis patients and with monthly review of dialysis patients.

In December of 2008, the United Nations Special Rapporteur on the Right to Health and the Special Rapporteur on Torture stated that adequate pain management should be regarded as a basic human right (18). Although attitudes of nephrologists to chronic opioid use is not known, 72%–84% of ESRD patients with significant pain have no analgesia prescribed (35). The prevalence of analgesic use in ESRD is highly variable but estimated at 24% (36). Approximately 15% are prescribed opioids, and even acetaminophen use is low at 6%.

One of the major barriers to effective pain management is the fear of opioid addiction from the perspectives of both patients and physicians (37); 35% of family physicians reported that they would never prescribe opioids for moderate or severe chronic pain, identifying addiction as a major barrier (38). Short-term opioid treatment for acute pain is associated with negligible addiction rates (0.03%–5%) (39). The prevalence of opioid abuse may be as high as 20% in patients receiving opioids for chronic pain (37). However, the recent increase in abuse of opioids is predominantly in young adults ages 18–25 years (37). Studies of older patients attending specialty clinics found rates of 1%–3% (40). There are no data specific to ESRD patients.

Addiction is characterized by loss of control over use, continued use despite knowledge of harmful consequences, compulsion to use, and craving (the four Cs). Aberrant drug behaviors, commonly used to identify addiction, refer to drug use that is not medically sanctioned (such as dose escalation, running out of drug early, binging, sharing of pain pills with relatives or friends, and doctor shopping to obtain multiple prescriptions). Diagnosing opioid addiction in ESRD patients is hampered by a lack of data on which aberrant behaviors best predict drug abuse. Aberrant behaviors may be precipitated by patients’ untreated pain, depression, anxiety, and maladaptive coping strategies, common issues for ESRD patients (41,42), rather than by addiction. In fact, nonaddicted patients frequently misuse opioids (43). The only major difference differentiating dialysis patients with chronic pain and patients with addiction is that patients not addicted are not seeking a psychoactive effect from their drugs.

Perhaps a more pressing concern for clinicians prescribing opioids for patients with limited life expectancy is the increased risk of death from unintentional drug overdoses (44). Most opioid deaths are accidental, and about one-half of the patients have a medical history of pain treatment (45). However, most patients who die from opioids are taking high daily doses and have one or more indicators of substance abuse as outlined above (45). Opioids are also one of a long list of medications that place the elderly at greater risk of falls, which constitute a leading cause of injuries, hospitalization, and deaths among the elderly (46). Although opioids have the potential to markedly improve patients’ symptom burden and quality of life, it is clear their use must be monitored carefully to prevent misuse and maximize benefit.

Evidence supporting the effectiveness of chronic opioid use in ESRD for chronic pain is extremely limited (47). Although opioids provide effective analgesia, they may exacerbate symptoms already prevalent in dialysis patients, such as cognitive impairment, sleepiness, nausea, vomiting, anorexia, and pruritus. Ongoing careful reassessment of the impact of chronic opioid use on overall symptom burden and functional status is essential. In addition, current guidelines (48,49) suggest universal precautions by screening for risk of abuse before starting opioids using a tool such as the Opioid Risk Tool (50). This tool identifies risk factors for opioid addiction, such as youth, current, past, or family history of substance abuse, psychiatric disorders, and childhood history of sexual abuse. Higher risk does not preclude opioid-based pain management but does require heightened monitoring for aberrant opioid behaviors. Management strategies for suspected opioid addiction or patients considered high risk for abuse or accidental death are outlined in Table 1. Frequent visits to the dialysis unit provide an ideal opportunity to coordinate and monitor outpatient use of opioids. Despite intravenous access, patients should be dosed orally whenever possible, even when on dialysis. Exceptions would include acutely ill patients compromised by factors such as vomiting, end-of-life weakness, or bowel obstruction.

T1-20
Table 1:
Management of high risk of addiction or suspected opioid addiction

The choice of analgesic for ESRD patients is very important. Active metabolites for many analgesics, including opioids, are excreted by the kidney, accumulate in patients with kidney failure, and may lead to toxicity. Recent reviews on the appropriate management of chronic pain in kidney failure and the evidence to support the use of particular analgesics (5153) (Figure 3) have led to the development clinical algorithms based on an adapted World Health Organization Analgesic Ladder (Figure 4) (54), and they are increasingly being used by nephrology programs across North America and the United Kingdom. In addition, the United Kingdom has established renal-specific terminal symptom algorithms, including the management of terminal pain, as part of the Liverpool Care Pathway (55,56), an integrated end-of-life care pathway implemented across the United Kingdom.

F3-20
Figure 3:
Preferred analgesic medication in ESRD.
F4-20
Figure 4:
Modified analgesic ladder for chronic pain management in patients with ESRD.

Most ESRD patients have a neuropathic component to their pain (e.g., peripheral neuropathy, phantom limb pain, ischemia, calciphylaxis, carpal tunnel syndrome, or steal syndrome). Neuropathic pain is typically described as burning, shooting, or stabbing and may be associated with episodes of spontaneous pain, hyperalgesia, and allodynia. It is often poorly responsive to opioids, requiring doses that are associated with unacceptable toxicity. In such cases, the use of adjuvants, either alone or in conjunction with steps 1–3 analgesics of the World Health Organization analgesic ladder, is crucial to control pain and avoid high opioid doses. Tricyclic antidepressants and anticonvulsants are the two classes of drugs for which there is most evidence of efficacy (51).

Despite the challenge of managing chronic pain in dialysis patients, professional medical bodies expect physicians to have the knowledge, seek out the knowledge, or consult pain or palliative care specialists appropriately (57). Fears of opioid addiction cannot derail the right to receive adequate pain management. Clinical competence and scope of practice is not an acceptable reason to refuse to treat chronic pain or patients who are perceived to be otherwise difficult (57). Physicians, however, are under no obligation to provide medications that they feel are inappropriate.

ACP

Recognizing when patients are at high risk of death is critical in timely implementation of palliative care, and it should include discussions around the appropriate initiation, withholding, or withdrawal of dialysis. Although there is a very large evidence base showing associations between individual factors and survival in patients with ESRD, only a few studies have attempted to combine these factors into clinically useful prognostic tools. There are limitations to each of these prognostic models, and no model addresses patients managed conservatively. As a result, no model has emerged as the most useful.

Perhaps one of the more promising models is a recently developed prognostic tool for prevalent hemodialysis patients (58) that combines actuarial estimations from the presence of traditional risk factors of age, serum albumin, and two comorbidities (peripheral vascular disease and dementia) with the modified surprise question (SQ): would you be surprised if this patient were to die in the next 6 months? The intent of the SQ is to counter the tendency of physicians to overestimate prognosis by asking them to consider whether the patient’s death within 6 months is within the realm of possibility. The SQ has been found to be effective in identifying dialysis patients who are 3.5 times more likely to die within 1 year (59). This tool is available free online and as an application for handheld devices (60). The model also predicts 12- and 18-month mortality, although the accuracy of these predictions has not been determined. This tool is currently being used in pilot palliative care programs in several Canadian and United Kingdom renal units, and additional validation and refinement are ongoing. The simplicity of the model allows for relatively easy integration into routine dialysis care with limited staff burden. Poor predicted survival probabilities could be used as prompts for timely discussions of goals of care and determination of end-of-life care preferences through ACP.

The timing of end-of-life discussions is important given unpredictable illness trajectories and progressive cognitive decline in ESRD (61). Approximately 73% of dialysis patients have either moderate or severe cognitive impairment on formal testing despite no prior documented history of cognitive impairment (61). Early ACP with ongoing communication and re-evaluation throughout the illness trajectory is clearly important. Sentinel events, such as hospitalizations, acute illness, and decline in functional status, present additional opportunities to engage in ACP.

There is increasing recognition that dialysis may not be the best treatment choice for all patients, especially those patients with poor functional status and high levels of comorbidity (6264). There is a role for conservative care for those patients with goals of care that are primarily palliative or patients who perceive limited benefit and considerable burden from dialysis (6368). This finding is supported by current clinical guidelines (23,25). Conservative care focuses on slowing the decline in renal function, actively managing symptoms, using ACP, and providing appropriate palliative care to address patients’ goals of care and optimize their quality of life (68). The specifics of facilitating ACP within the context of ESRD have been reviewed recently in this Ethics Series (69) and elsewhere, and therefore, they will not be discussed here (7072).

Model for Delivering High-Quality Palliative Care

Several key components are required to deliver high-quality palliative care. This discussion will focus on timely access to palliative care services, including consultation with specialist palliative care, a multidisciplinary team to manage the physical, psychosocial, and spiritual end-of-life needs of ESRD patients, adequate nephrology fellow training in palliative care, and patient and family education.

Most ESRD patients will experience substantial disability, symptom burden, and requirement for quality palliative care beyond the last year of life (73,74). Traditional palliative care models have focused primarily on cancer patients, many of whom experience most of their symptoms and disability in the last 6 months of life. Models limiting access to palliative care services, such as hospice, based on this understanding of illness do not adequately serve the needs of ESRD patients.

Patients should be offered the option of dying where they prefer, including at home with hospice care, provided that there is sufficient and appropriate support to enable this process. Although hospice is recognized for providing excellent end-of-life care, few ESRD patients receive hospice care, even after withdrawal from dialysis (19). Using the United States Renal Data System, it was determined that only 13.5% of 115,239 dialysis patients in the United States who died between January 1, 2001, and December 31, 2002 used hospice. Patients who used hospice services were more likely to die at home. Decreased hospitalization costs led to substantial cost savings (19). In oncology, receiving early palliative care is associated with better quality of life, fewer emergency department visits and hospitalizations, less aggressive care at the end of life, and surprisingly, longer survival (75). Early integration of palliative care, including the creation of conservative care pathways, and access to specialist palliative services, such as hospice, are likely to be hugely beneficial to ESRD patients.

Renal palliative care is best delivered through the combined expertise of nephrology professionals, family or community-based professionals, and specialist hospice or palliative care providers (23). Specialist palliative care consultation might be required for the four following reasons: (1) complex pain and symptom control, (2) psychological or family/social issues despite first-line intervention by the renal team, (3) when conservatively managed patients are approaching the last few weeks of life, especially if home care is preferred by the patient, or (4) when patients and family are experiencing difficulties in the decision to start or stop dialysis despite open discussion with the renal team, particularly when there are issues of family conflict, impaired capacity, or complex concurrent disease.

Renal palliative care requires a multiprofessional team with expertise in managing not only the physical, psychologic, and social needs but also the spiritual aspects of end-of-life care for ESRD patients (23). This aspect might include chaplains or spiritual counselors. ESRD patients have substantial unmet spiritual care needs (9) that impact negatively on their quality of life (76). Many report a fear of being a burden and becoming dependent on others or a loss of dignity, self-esteem, or control. These losses often evoke deeper questioning about meaning and spiritual beliefs. Providing spiritual support is a core component of comprehensive palliative care and may help to preserve or enhance quality of life, even in the face of life-limiting illness. Simple screening questions, such as are there any spiritual concerns you would like to have addressed or discussed with a member of the healthcare team?, may help initiate more in-depth discussions for those patients who indicate distress. Support should also be offered to patients’ families, including bereavement support where appropriate (23).

Professionals delivering care should receive training in assessment and management of symptoms and advanced communication skills (23). Training in palliative care for nephrology trainees is inadequate. One-third of fellows had conducted two or fewer family meetings, and specific palliative care content areas, such as pain management, communicating bad news, and how to access palliative care services, were taught infrequently. What little palliative care training was received frequently occurred without attending nephrologist supervision (77). It is not surprising, therefore, that nephrologists do not feel adequately prepared to deal with end-of-life issues for their patients (24). There is clearly a need to upgrade training to enable delivery of high-quality palliative care.

Inadequate patient education is also a barrier to effective integration and delivery of palliative care. In Canada, approximately 60% of individuals 16 years and older lack the capacity to obtain, understand, and act on health information and services and make appropriate health decisions on their own (18). Health illiteracy is even more prevalent among those patients with ESRD. Most ESRD patients have poor knowledge of palliative care (10), thinking that it is solely for cancer patients or that it is equivalent to terminal care or giving up on life. The benefits of palliative care need to be emphasized to patients, along with the understanding that palliative care is not so much about dying but about living the days that one has left to the maximum.

Summary

Ultimately, the responsibility of caring for ESRD patients and treating their symptoms, whether these symptoms are related to ESRD or comorbid diseases, is with the nephrology team. Nephrology programs need to develop and integrate a palliative care strategy for ESRD patients. This strategy must include education of nephrology trainees and the multidisciplinary team as well as patients. Ongoing research and knowledge translation will continue to be central to this process. Given the cost to patients (in terms of symptom burden, poor quality of life, hospitalizations, and burden of life-sustaining treatment) and the costs to healthcare systems, systematically incorporating palliative care into the management of ESRD patients is imperative.

Disclosures

None.

Published online ahead of print. Publication date available at www.cjasn.org.

References

1. US Renal Data System, National Institutes of Health, and National Institute of Diabetes and Digestive and Kidney Diseases: US Renal Data System; USRDS 2011. 2011 Annual Data Report: Atlas of End-Stage Renal Disease in the United States. Bethesda, MD, USRDS, 2011
2. Cohen LM, Germain MJ, Poppel DM, Woods AL, Pekow PS, Kjellstrand CM: Dying well after discontinuing the life-support treatment of dialysis. Arch Intern Med 160: 2513–2518, 2000
3. Germain MJ, Cohen LM, Davison SN: Withholding and withdrawal from dialysis: What we know about how our patients die. Semin Dial 20: 195–199, 2007
4. Davison SN, Jhangri GS, Johnson JA: Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: A simple assessment of symptom burden. Kidney Int 69: 1621–1625, 2006
5. Davison SN, Jhangri GS, Johnson JA: Longitudinal validation of a modified Edmonton symptom assessment system (ESAS) in haemodialysis patients. Nephrol Dial Transplant 21: 3189–3195, 2006
6. Weisbord SD, Fried LF, Arnold RM, Fine MJ, Levenson DJ, Peterson RA, Switzer GE: Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol 16: 2487–2494, 2005
7. Saini T, Murtagh FE, Dupont PJ, McKinnon PM, Hatfield P, Saunders Y: Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease. Palliat Med 20: 631–636, 2006
8. Murtagh FE, Addington-Hall JM, Donohoe P, Higginson IJ: Symptom management in patients with established renal failure managed without dialysis. EDTNA ERCA J 32: 93–98, 2006
9. Davison SN, Jhangri GS: Existential and supportive care needs among patients with chronic kidney disease. J Pain Symptom Manage 40: 838–843, 2010
10. Davison SN: End-of-life care preferences and needs: Perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol 5: 195–204, 2010
11. Sekkarie MA, Moss AH: Withholding and withdrawing dialysis: The role of physician specialty and education and patient functional status. Am J Kidney Dis 31: 464–472, 1998
12. Fine A, Fontaine B, Kraushar MM, Rich BR: Nephrologists should voluntarily divulge survival data to potential dialysis patients: A questionnaire study. Perit Dial Int 25: 269–273, 2005
13. Cohen LM, Germain M, Woods A, Gilman ED, McCue JD: Patient attitudes and psychological considerations in dialysis discontinuation. Psychosomatics 34: 395–401, 1993
14. Holley JL, Hines SC, Glover JJ, Babrow AS, Badzek LA, Moss AH: Failure of advance care planning to elicit patients’ preferences for withdrawal from dialysis. Am J Kidney Dis 33: 688–693, 1999
15. Moss AH, Hozayen O, King K, Holley JL, Schmidt RJ: Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit. Am J Kidney Dis 38: 847–852, 2001
16. Moss AH, Holley JL, Upton MB: Outcomes of cardiopulmonary resuscitation in dialysis patients. J Am Soc Nephrol 3: 1238–1243, 1992
17. Miura Y, Asai A, Matsushima M, Nagata S, Onishi M, Shimbo T, Hosoya T, Fukuhara S: Families’ and physicians’ predictions of dialysis patients’ preferences regarding life-sustaining treatments in Japan. Am J Kidney Dis 47: 122–130, 2006
18. Parliamentary Committee on Palliative and Compassionate Care: Not to Be Forgotten: Care of Vulnerable Canadians; Parliamentary Committee on Palliative and Compassionate Care, Parliamentary Committee on Palliative and Compassionate Care, 2011. Available at: http://pcpcc-cpspsc.com/report. Accessed September 4, 2012
19. Murray AM, Arko C, Chen SC, Gilbertson DT, Moss AH: Use of hospice in the United States dialysis population. Clin J Am Soc Nephrol 1: 1248–1255, 2006
20. Wong SP, Kreuter W, O’Hare AM: Treatment intensity at the end of life in older adults receiving long-term dialysis. Arch Intern Med 172: 661–663, 2012
21. Payne S, Sheldon F, Jarrett N, Large S, Smith P, Davis CL, Turner P, George S: Differences in understanding of specialist palliative care amongst service providers and commissioners in South London. Palliat Med 16: 395–402, 2002
22. World Health Organization: WHO Definition of Palliative Care, World Health Organization, 2008. Available at: http://www.who.int/cancer/palliative/definition/en/. Accessed September 4, 2012.
23. Renal Physicians Association: Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Ed., Washington, DC, Renal Physicians Association, 2010
24. Davison SN, Jhangri GS, Holley JL, Moss AH: Nephrologists’ reported preparedness for end-of-life decision-making. Clin J Am Soc Nephrol 1: 1256–1262, 2006
25. American Society of Nephrology: Choosing Wisely: Five Things Physicians and Patients Should Question, 2012. Available at: http://www.asn-online.org/policy_and_public_affairs/choosingwisely/FiveThingsPhysiciansandPatientsShouldQuestion.pdf. Accessed July 4, 2012
26. National End of Life Programme/NHS Kidney Care: End-of-Life Care in Advanced Kidney Disease: A Framework for Implementation, National End of Life Programme/NHS Kidney Care, 2009. Available at: http://www.endoflifecareforadults.nhs.uk/assets/downloads/endoflifecareAKD.pdf. Accessed September 4, 2012
27. Holley JL, Davison SN, Moss AH: Nephrologists’ changing practices in reported end-of-life decision-making. Clin J Am Soc Nephrol 2: 107–111, 2007
28. Davison SN: Integrating palliative care for patients with advanced chronic kidney disease: Recent advances, remaining challenges. J Palliat Care 27: 53–61, 2011
29. Davison SN: Pain in hemodialysis patients: prevalence, cause, severity, and management. Am J Kidney Dis 42: 1239–1247, 2003
30. Davison SN, Jhangri GS: Impact of pain and symptom burden on the health-related quality of life of hemodialysis patients. J Pain Symptom Manage 39: 477–485, 2010
31. Davison SN, Jhangri GS: The impact of chronic pain on depression, sleep, and the desire to withdraw from dialysis in hemodialysis patients. J Pain Symptom Manage 30: 465–473, 2005
32. Weisbord SD, Fried LF, Mor MK, Resnick AL, Unruh ML, Palevsky PM, Levenson DJ, Cooksey SH, Fine MJ, Kimmel PL, Arnold RM: Renal provider recognition of symptoms in patients on maintenance hemodialysis. Clin J Am Soc Nephrol 2: 960–967, 2007
33. Murphy EL, Murtagh FE, Carey I, Sheerin NS: Understanding symptoms in patients with advanced chronic kidney disease managed without dialysis: Use of a short patient-completed assessment tool. Nephron Clin Pract 111: c74–c80, 2009
34. Weisbord SD, Fried LF, Arnold RM, Rotondi AJ, Fine MJ, Levenson DJ, Switzer GE: Development of a symptom assessment instrument for chronic hemodialysis patients: The Dialysis Symptom Index. J Pain Symptom Manage 27: 226–240, 2004
35. Wyne A, Rai R, Cuerden M, Clark WF, Suri RS: Opioid and benzodiazepine use in end-stage renal disease: A systematic review. Clin J Am Soc Nephrol 6: 326–333, 2011
36. Bailie GR, Mason NA, Bragg-Gresham JL, Gillespie BW, Young EW: Analgesic prescription patterns among hemodialysis patients in the DOPPS: Potential for underprescription. Kidney Int 65: 2419–2425, 2004
37. Manchikanti L: National drug control policy and prescription drug abuse: Facts and fallacies. Pain Physician 10: 399–424, 2007
38. Morley-Forster PK, Clark AJ, Speechley M, Moulin DE: Attitudes toward opioid use for chronic pain: A Canadian physician survey. Pain Res Manag 8: 189–194, 2003
39. Ballantyne JC, LaForge KS: Opioid dependence and addiction during opioid treatment of chronic pain. Pain 129: 235–255, 2007
40. Mahowald ML, Singh JA, Majeski P: Opioid use by patients in an orthopedics spine clinic. Arthritis Rheum 52: 312–321, 2005
41. Passik SD, Kirsh KL, McDonald MV, Ahn S, Russak SM, Martin L, Rosenfeld B, Breitbart WS, Portenoy RK: A pilot survey of aberrant drug-taking attitudes and behaviors in samples of cancer and AIDS patients. J Pain Symptom Manage 19: 274–286, 2000
42. Kahan M, Srivastava A, Wilson L, Gourlay D, Midmer D: Misuse of and dependence on opioids: Study of chronic pain patients. Can Fam Physician 52: 1081–1087, 2006
43. Compton P, Darakjian J, Miotto K: Screening for addiction in patients with chronic pain and “problematic” substance use: Evaluation of a pilot assessment tool. J Pain Symptom Manage 16: 355–363, 1998
44. Okie S: A flood of opioids, a rising tide of deaths. N Engl J Med 363: 1981–1985, 2010
45. Hall AJ, Logan JE, Toblin RL, Kaplan JA, Kraner JC, Bixler D, Crosby AE, Paulozzi LJ: Patterns of abuse among unintentional pharmaceutical overdose fatalities. JAMA 300: 2613–2620, 2008
46. Huang AR, Mallet L, Rochefort CM, Eguale T, Buckeridge DL, Tamblyn R: Medication-related falls in the elderly: Causative factors and preventive strategies. Drugs Aging 29: 359–376, 2012
47. Barakzoy AS, Moss AH: Efficacy of the world health organization analgesic ladder to treat pain in end-stage renal disease. J Am Soc Nephrol 17: 3198–3203, 2006
48. Chou R, Fanciullo GJ, Fine PG, Adler JA, Ballantyne JC, Davies P, Donovan MI, Fishbain DA, Foley KM, Fudin J, Gilson AM, Kelter A, Mauskop A, O’Connor PG, Passik SD, Pasternak GW, Portenoy RK, Rich BA, Roberts RG, Todd KH, Miaskowski CAmerican Pain Society-American Academy of Pain Medicine Opioids Guidelines Panel: Clinical guidelines for the use of chronic opioid therapy in chronic noncancer pain. J Pain 10: 113–130, 2009
49. Furlan AD, Reardon R, Weppler CNational Opioid Use Guideline Group: Opioids for chronic noncancer pain: A new Canadian practice guideline. CMAJ 182: 923–930, 2010
50. Webster LR, Webster RM: Predicting aberrant behaviors in opioid-treated patients: Preliminary validation of the Opioid Risk Tool. Pain Med 6: 432–442, 2005
51. Davison SN, Ferro CJ, Chambers J: Management of pain in renal failure. Supportive care for the renal patient. In: Supportive Care for the Renal Patient 2, edited by Chambers EJ, Brown E, Germain M, London, Oxford University Press, 2010
52. King S, Forbes K, Hanks GW, Ferro CJ, Chambers EJ: A systematic review of the use of opioid medication for those with moderate to severe cancer pain and renal impairment: A European Palliative Care Research Collaborative opioid guidelines project. Palliat Med 25: 525–552, 2011
53. Kurella M, Bennett WM, Chertow GM: Analgesia in patients with ESRD: A review of available evidence. Am J Kidney Dis 42: 217–228, 2003
54. Mid-Atlantic Renal Coalition and Kidney End-of-Life Coalition: Clinical Algorithm & Preferred Medications to Treat Pain in Dialysis Patients, Mid-Atlantic Renal Coalition and Kidney End-of-Life Coalition, 2009. Available at: http://www.kicheyeol.org/files/painbrochure9-09.aspx. Accessed September 4, 2012
55. The Marie Curie Palliative Care Institute: Liverpool Care Pathway, The Marie Curie Palliative Care Institute, 2009. Available at: http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/. Accessed September 4, 2012.
56. Douglas C, Murtagh FE, Chambers EJ, Howse M, Ellershaw J: Symptom management for the adult patient dying with advanced chronic kidney disease: A review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group. Palliat Med 23: 103–110, 2009
57. Davis D: The Challenges of Relieving Chronic Pain with Narcotics, CMPA Perspective, March: 17–19, 2012
58. Cohen LM, Ruthazer R, Moss AH, Germain MJ: Predicting six-month mortality for patients who are on maintenance hemodialysis. Clin J Am Soc Nephrol 5: 72–79, 2010
59. Moss AH, Ganjoo J, Sharma S, Gansor J, Senft S, Weaner B, Dalton C, MacKay K, Pellegrino B, Anantharaman P, Schmidt R: Utility of the “surprise” question to identify dialysis patients with high mortality. Clin J Am Soc Nephrol 3: 1379–1384, 2008
60. Cohen LM, Ruthazer R, Moss AH, Germain MJ: Integrated Prognostic Model to Estimate 6-Month Survival for Patients on Hemodialysis, 2012. Available at: http://www.qxmd.com/calculate-online/nephrology/predicting-6-month-mortality-on-hemodialysis. Accessed April 18, 2012
61. Murray AM, Tupper DE, Knopman DS, Gilbertson DT, Pederson SL, Li S, Smith GE, Hochhalter AK, Collins AJ, Kane RL: Cognitive impairment in hemodialysis patients is common. Neurology 67: 216–223, 2006
62. Germain MJ, Davison SN, Moss AH: When enough is enough: The nephrologist's responsibility when ordering dialysis. Am J Kidney Dis 58: 135–143, 2011
63. Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE: Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant 22: 1955–1962, 2007
64. Smith C, Da Silva-Gane M, Chandna S, Warwicker P, Greenwood R, Farrington K: Choosing not to dialyse: Evaluation of planned non-dialytic management in a cohort of patients with end-stage renal failure. Nephron Clin Pract 95: c40–c46, 2003
65. Carson RC, Juszczak M, Davenport A, Burns A: Is maximum conservative management an equivalent treatment option to dialysis for elderly patients with significant comorbid disease? Clin J Am Soc Nephrol 4: 1611–1619, 2009
66. Chandna SM, Da Silva-Gane M, Marshall C, Warwicker P, Greenwood RN, Farrington K: Survival of elderly patients with stage 5 CKD: Comparison of conservative management and renal replacement therapy. Nephrol Dial Transplant 26: 1608–1614, 2011
67. De Biase V, Tobaldini O, Boaretti C, Abaterusso C, Pertica N, Loschiavo C, Trabucco G, Lupo A, Gambaro G: Prolonged conservative treatment for frail elderly patients with end-stage renal disease: The Verona experience. Nephrol Dial Transplant 23: 1313–1317, 2008
68. Burns A, Carson R: Maximum conservative management: A worthwhile treatment for elderly patients with renal failure who choose not to undergo dialysis. J Palliat Med 10: 1245–1247, 2007
69. Holley JL: Advance care planning in CKD/ESRD: An evolving process. Clin J Am Soc Nephrol 7: 1033–1038, 2012
70. Davison SN: Facilitating advance care planning for patients with end-stage renal disease: The patient perspective. Clin J Am Soc Nephrol 1: 1023–1028, 2006
71. Davison SN, Simpson C: Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ 333: 886, 2006
72. Davison SN, Torgunrud C: The creation of an advance care planning process for patients with ESRD. Am J Kidney Dis 49: 27–36, 2007
73. Gill TM, Gahbauer EA, Han L, Allore HG: Trajectories of disability in the last year of life. N Engl J Med 362: 1173–1180, 2010
74. Murtagh FE, Sheerin NS, Addington-Hall J, Higginson IJ: Trajectories of illness in stage 5 chronic kidney disease: A longitudinal study of patient symptoms and concerns in the last year of life. Clin J Am Soc Nephrol 6: 1580–1590, 2011
75. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363: 733–742, 2010
76. Davison SN, Jhangri GS: Existential and religious dimensions of spirituality and their relationship with health-related quality of life in chronic kidney disease. Clin J Am Soc Nephrol 5: 1969–1976, 2010
77. Holley JL, Carmody SS, Moss AH, Sullivan AM, Cohen LM, Block SD, Arnold RM: The need for end-of-life care training in nephrology: National survey results of nephrology fellows. Am J Kidney Dis 42: 813–820, 2003
Copyright © 2012 The Authors. Published by Wolters Kluwer Health, Inc. All rights reserved.