American Journal of Kidney Diseases
Volume 45, Issue 1 , Pages 209-212, January 2005

Improving end-of-life care for dialysis patients

  • Alvin H. Moss, MD

      Affiliations

    • Section of Nephrology, Department of Medicine, West Virginia University School of Medicine, Morgantown, West Virginia

published online 29 November 2004.

Article Outline

 

THERE IS GROWING recognition that nephrologists and others who care for dialysis patients need to improve their knowledge and skills in palliative care, including end-of-life care.1 There are 3 primary reasons. First, the dialysis population is aging, and as dialysis patients age, they develop multiple comorbid conditions that require management in addition to their underlying kidney failure. In a study of severely ill dialysis patients, they were noted to have an average of 10.5 symptoms.2 Second, death is common. In 2001, more than 76,000 dialysis patients died. The average dialysis unit experiences 1 to 2 patient deaths per month. Third, dialysis patients have a severely limited survival. They live approximately one quarter as long as age-matched patients without renal disease. The survival for dialysis patients is comparable to that of many patients with cancer. For example, the expected remaining years of life for a 70-year-old white male dialysis patient is 2.8 years compared with 12.9 for an age-matched white man in the general US population.3 The 5-year unadjusted survival for all incident end-stage renal disease (ESRD) patients is 38%. For incident ESRD patients older than the age of 65 (who constitute nearly one half of all new dialysis patients), the 5-year survival is only 18%.4 Because of the growing recognition of the morbidity and mortality of ESRD patients, palliative care is included among the topics in the core curriculum in nephrology for nephrology fellowship training programs.5

In recent years, 2 working groups, 1 assembled by the Renal Physicians Association (RPA) and the American Society of Nephrology (ASN)6 and another by the Robert Wood Johnson Foundation’s Promoting Excellence in End-of-Life Care program,7 have performed systematic reviews of the medical literature on this topic, published bibliographies, deliberated on their findings, and made recommendations to the nephrology community on how to improve this care. The article by Cohen et al in this issue of the American Journal of Kidney Diseases provides information on the deaths of 86 dialysis patients from the perspective of their families, identifies problematic areas, and underscores the need to devote more attention to the quality of care that dialysis patients receive at the end of life.8

One of the most dramatic findings in the study by Cohen et al was the prevalence and severity of pain. Three quarters of patients were perceived to be in pain during the last week of life, and this pain occurred all or most of the time for most patients. With the exception of 1 article on pain in dialysis patients in the 1980s,9 for the most part pain in dialysis patients has not been a topic of research until recent years. In another study by Cohen et al, pain was the most common symptom for 79 dialysis patients during the last day of life.10 In research examining the relationship between symptoms and quality of life, pain was noted to be the most common symptom of 165 hemodialysis patients.11 An inverse relationship was found between the number of symptoms and the patients’ reported quality of life. In a prospective study of 205 Canadian hemodialysis patients, Davison noted that 50% of patients reported pain.12 In 75% of these patients, the pain was either untreated or undertreated.

In short, pain is widespread among dialysis patients, and its undertreatment negatively impacts patients’ quality of life. The World Health Organization’s 3-step ladder for pain management is evidence based and convenient to apply to the treatment of ESRD patients.13 It recommends progressive levels of pain management based on the severity of the patients’ pain report. Since the glucuronide metabolites of morphine and hydromorphone accumulate in patients with decreased glomerular filtration rates and can cause opioid neurotoxicity, oxycodone, fentanyl, and methadone are safer pain medications to use for ESRD patients with severe pain.5

The second striking finding in the article by Cohen et al8 was the widespread use of advance directives. Eighty-one percent of patients had completed a health care proxy. Interestingly enough, patients who had completed a health care proxy or living will were significantly more likely to have died at home. Of those patients who had completed an advance directive, only about half of the patients’ families thought it helped a great deal in the patient’s management. The practice of advance care planning, including the completion of written advance directives, has not been optimized among dialysis patients. In a study of 400 dialysis patients in New York and West Virginia, 51% had completed an advance directive. Among those who had completed both a living will and a health care proxy, only 43% had discussed with their family their wishes for cardiopulmonary resuscitation, and only 31% had discussed circumstances under which they might want to stop dialysis.14 Advance care planning is properly understood as not merely the completion of a written advance directive. Patients and families view advance care planning as a way to prepare for death, relieve burdens on loved ones, strengthen interpersonal relationships, and maintain control over present and future health care. Advance directives are more helpful if disease states in which patients would not want particular life-sustaining treatments, such as coma or severe dementia, are specified.15

There is a low likelihood of benefit of cardiopulmonary resuscitation (CPR) for most dialysis patients.16 As part of advance care planning, patients’ preferences regarding CPR should be discussed. Dialysis patients have an overly optimistic assessment of the outcomes of CPR, especially those patients who have seen CPR performed on television. It is necessary for nephrologists to educate patients about the risks and benefits of CPR based on the patient’s condition prior to obtaining consent or refusal for CPR.17 Respect for patient self-determination dictates that an informed dialysis patient’s decision to forgo CPR should be respected. The RPA and ASN encourage dialysis facilities to develop policies and procedures for respecting patients’ preferences with regard to CPR in the dialysis unit.18 Since the vast majority of dialysis patients (92%) believe that a dialysis patient’s wish not to undergo CPR should be respected in the dialysis unit, dialysis units should educate all their patients that they will respect patients’ wishes.17 Dialysis patients should be informed that if a patient experiences arrest in the dialysis unit all measures will be taken to ensure the patient’s comfort and dignity. The Robert Wood Johnson Foundation’s ESRD Peer Workgroup developed a model policy and procedure for do-not-resuscitate orders in the dialysis unit, both of which are available online in the appendix of their report.7

A third finding of the study by Cohen et al8 is the very low utilization of hospice. Although 27% of the patients died at home, only 4% died with hospice. Since 22 of the patients in Cohen et al’s study discontinued dialysis, these patients could have been predicted to be terminally ill with a life expectancy of 8 to12 days and appropriate for hospice referral. Hospice physicians and nurses have expertise in pain and symptom management and advance care planning. Hospice uses a team approach—usually in the home but sometimes in a residential facility—to help meet the physical, psychological, social, and spiritual needs of the patient and family. Hospice personnel also provide bereavement support for patients’ families for 1 year after the patient’s death.5 The RPA/ASN Position Statement on Quality Care at the End of Life recommends that the renal care team refer ESRD patients who have decided to stop or not to start dialysis to hospice.16 The RPA/ASN clinical practice guideline “Shared Decision-Making in the Appropriate Initiation of and Withdrawal From Dialysis” also recommends that hospice professionals be involved in end-of-life care for ESRD patients.6 Not only in the study by Cohen et al but for dialysis patients overall, hospice is significantly underutilized. In a cohort study of 115,239 patients on dialysis in 2001 to 2002 with Medicare as the primary payer conducted by the United States Renal Data System, only 13.5% were found to have died with hospice compared with 25% of the US population (personal communication, Alan J. Collins, MD, August 11, 2004). Recognizing the value of hospice care for ESRD patients, the Centers for Medicare and Medicaid Services (CMS) has added a question about hospice utilization to the revised CMS-2746 Death Notification form. If a dialysis patient wants to continue dialysis while being enrolled in hospice under the Medicare hospice benefit, not only must the patient be certified by his or her attending physician to have a life expectancy of 6 months or less if the disease takes its normal course, but also the patient must have a terminal diagnosis for hospice other than kidney disease (eg, cancer or end-stage heart disease). Between 2001 and 2002, 15,565 ESRD patients who had Medicare as their primary payer were enrolled in hospice, the majority of whom discontinued dialysis prior to enrollment, but at least 2,751 continued dialysis and had a non-renal disease terminal diagnosis (personal communication, Allan J. Collins, MD, August 11, 2004). The need for most dialysis patients to stop dialysis to be eligible for the Medicare hospice benefit has been an impediment to gain acceptance of hospice by many patients and families. The RPA and the Forum of ESRD Networks are in a dialogue with the CMS to allow hospice referral for ESRD patients who want to continue dialysis and who are certified to be terminally ill with an expected life expectancy of 6 months or less with ESRD as the terminal diagnosis. Because of the large symptom burden and limited life expectancy of many ESRD patients, the hope is that CMS will change Medicare policy to allow terminally ill ESRD patients access to hospice.

The inadequacy of end-of-life care for dialysis patients can be attributed at least in part to the lack of inclusion of this topic in fellowship training. In a survey of 171 second-year nephrology fellows, fellows rated the quality of teaching they received on end-of-life care as significantly lower than the overall teaching quality during fellowship. Although nephrology fellows reported caring for an average of 15 dying dialysis patients in the preceding year, most reported being unprepared to do so.19 The RPA and the ASN have recognized this deficit in the training of nephrologists and are increasing educational offerings on this topic.

From the study of Cohen et al and others that have been conducted in the last few years, a picture is emerging of how nephrologists can improve treatment of their ESRD patients at the end of life. This picture includes better assessment and management of pain; systematic inclusion of advance care planning, including completion of advance directives and discussion of CPR preferences, as part of dialysis unit semiannual patient care conferences; and consideration of referral to hospice when the nephrologist deems that the patient has 6 months or less to live. The knowledge and skills to improve end-of-life care for dialysis patients are available. With application of current knowledge, nephrologists have improved adequacy of dialysis, anemia management, and vascular access for their patients. Similar improvement for dialysis patients in end-of-life care can occur if nephrologists incorporate current knowledge into their practices.

Back to Article Outline

References 

  1. In:  Chambers EJ ,  Germain M ,  Brown E editor. Supportive Care for the Renal Patient . Oxford: Oxford University Press; 2004;
  2. Weisbord SD , Carmody SS , Bruns FJ , et al.   Symptom burden, quality of life, advance care planning, and the potential value of palliative care in severely ill haemodialysis patients . Nephrol Dial Transplant . 2003;18:1345–1352
  3. United States Renal Data System . USRDS 2003 Annual Data Report (Atlas of End-Stage Renal Disease in the United States) . In: Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2003;p. 107; Table 6.a
  4. United States Renal Data System . USRDS 2003 Annual Data Report (Atlas of End-Stage Renal Disease in the United States) . In: Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2003;p. 500–505
  5. Moss AH , Holley JL , Davison SN , et al.   Palliative care . Am J Kidney Dis . 2004;43:172–185
  6. Renal Physicians Association and American Society of Nephrology . Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, Clinical Practice Guideline Number 2 . Washington, DC: Renal Physicians Association; 2000;
  7. Robert Wood Johnson Foundation End-Stage Renal Disease Peer Workgroup: Completing the Continuum of Nephrology Care: Recommendations to the Field [Promoting Excellence in End-of-Life Care Web site]. 2003. Available at: http://promotingexcellence.org/esrd/. Accessed: October 9, 2004
  8. Cohen LM , Germain MJ , Woods AL , Mirot A , Burleson JA . The family perspective of ESRD deaths . Am J Kidney Dis . 2005;45:154–161
  9. Binik YM , Baker AG , Kalogeropoulos D , et al.   Pain, control over treatment and compliance in dialysis and transplant patients . Kidney Int . 1982;21:840–848
  10. Cohen LM , Germain M , Poppel DM , Woods A , Kjellstrand CM . Dialysis discontinuation and palliative care . Am J Kidney Dis . 2000;36:140–144
  11. Kimmel PL , Emont SL , Newmann JM , Danko H , Moss AH . ESRD patient quality of life (Symptoms, spiritual beliefs, psychosocial factors, and ethnicity) . Am J Kidney Dis . 2003;42:713–721
  12. Davison SN . Pain in hemodialysis patients (Prevalence, cause, severity, and management) . Am J Kidney Dis . 2003;42:1239–1247
  13. Hanks G , Cherny NI , Fallon M . Opioid analgesic therapy . In:  Doyle D ,  Hanks G ,  Cherny NI ,  Calman K editor. Oxford Textbook of Palliative Medicine . (ed 3). Oxford: Oxford University Press; 2004;p. 316–342
  14. Holley JL , Hines SC , Glover JJ , Babro WAS , Badzek LA , Moss AH . Failure of advance care planning to elicit patients’ preference for withdrawal from dialysis . Am J Kidney Dis . 1999;33:688–693
  15. Holley JL . Advance directives and advance care planning in patients with end-stage renal disease . In:  Chambers EJ ,  Germain M ,  Brown E editor. Supportive Care for the Renal Patient, chap 4 . Oxford: Oxford University Press; 2004;p. 35–43
  16. Moss AH , Holley JL , Upton MB . Outcomes of cardiopulmonary resuscitation in dialysis patients . J Am Soc Nephrol . 1992;3:238–243
  17. Moss AH , Hozayen O , King K , Holley JL , Schmidt RJ . Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit . Am J Kidney Dis . 2001;38:847–852
  18. Renal Physicians Association and American Society of Nephrology: Position statement on quality care at the end of life (Renal Physicians Association Web site), January 19, 2002. Available at: https://www.renalmd.org/members/downloads/RPAASN_PositiononQualityCareattheEndofLiferevised.pdf. Accessed: October 9, 2004
  19. Holley JL , Carmody SS , Moss AH , et al.   The need for end-of-life care training in nephrology (National survey results of nephrology fellows) . Am J Kidney Dis . 2003;42:813–820

PII: S0272-6386(04)01444-1

doi:10.1053/j.ajkd.2004.10.010

American Journal of Kidney Diseases
Volume 45, Issue 1 , Pages 209-212, January 2005

Article Tools