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Maintaining Quality of Life at the End of Life in the End-Stage Renal Disease Population

2008; Elsevier BV; Volume: 15; Issue: 2 Linguagem: Inglês

10.1053/j.ackd.2008.01.005

1548-5609

Michael J. Germain, Lewis M. Cohen,

Pharmacological Effects and Toxicity Studies

The rapidly advancing age of incident dialysis patient has coincided with a rising mortality rate during the first year of dialysis. This is occurring despite a steady decline in mortality of prevalent patients. These statistics suggest that there is a subset of sick, elderly dialysis patients who will not survive the first 6 months of dialysis. It may be that these patients would be better served with a conservative, palliative approach that does not include initiation of dialysis. Even though hospice care is universally available to the Center for Medicare and Medicaid Services population, dialysis patients encounter many barriers to obtaining this benefit and have a hospice utilization rate only one quarter that of cancer patients. This article discusses the barriers to and goals of palliative care in the chronic kidney disease/end-stage renal disease population. The rapidly advancing age of incident dialysis patient has coincided with a rising mortality rate during the first year of dialysis. This is occurring despite a steady decline in mortality of prevalent patients. These statistics suggest that there is a subset of sick, elderly dialysis patients who will not survive the first 6 months of dialysis. It may be that these patients would be better served with a conservative, palliative approach that does not include initiation of dialysis. Even though hospice care is universally available to the Center for Medicare and Medicaid Services population, dialysis patients encounter many barriers to obtaining this benefit and have a hospice utilization rate only one quarter that of cancer patients. This article discusses the barriers to and goals of palliative care in the chronic kidney disease/end-stage renal disease population. I don't want to achieve immortality through my work. I want to achieve it through not dying.—Woody Allen Although we can appreciate Woody Allen's sentiment, we must recognize that none of us is going to achieve his wish; dying can be forestalled, but death is inevitable. Especially if one works in dialysis clinics, death is an unfortunate, unavoidable, and all too familiar phenomenon. As discussed elsewhere in this special volume of the journal, end-stage renal disease (ESRD) has practically become synonymous with geriatric medicine. The most recent United States Renal Data System (USRDS) data show that the most rapid increase in incident dialysis patients is in people over 75 years of age.1U.S. Renal Data System: USRDS 2007 annual data report: Atlas of end-stage renal disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2007. Available at: http://www.usrds.org/2007/pdf/00b_ei_07.pdf. Accessed February 8, 2008Google Scholar This report also documents a continued decline in mortality in incident dialysis patients over the past 10 years but no change in the mortality of patients in the first year of dialysis. Half of all dialysis deaths (37,000/74,000) in 2005 were people over 70 years of age. Furthermore, in people over 75 years old starting dialysis, the mortality rate in the initial 6 months on dialysis has increased dramatically over the past 10 years (Fig 1). A recent analysis of 209,622 veterans with chronic kidney disease showed that all chronic kidney disease patients over 65 years of age were more likely to die than start dialysis except at glomerular filtration rates (GFRs) <15 mL/min2. Death became increasingly more likely than dialysis with advancing age so that, in patients over 85 years at any level of baseline GFR, death was more likely than dialysis (Fig 2). There are likely 2 reasons for the elderly dying more frequently than starting dialysis. First, survival time is shorter in the elderly, and, second, the decline in GFR was half that of a younger reference group.2O'Hare A.M. Choi A.I. Bertenthal D. Age effects outcomes in chronic kidney disease.J Am Soc Nephrol. 2007; 18: 2758-2765Crossref PubMed Scopus (530) Google Scholar The contention that dialysis should be selectively used in this older age group is further supported by a recent study in the United Kingdom. Murtagh et al3Murtagh F.E. Marsh J.E. Donohoe P. et al.Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5.Nephrol Dial Transplant. 2007; 22: 1955-1962Crossref PubMed Scopus (511) Google Scholar have compared elderly patients who chose not to start dialysis (conservative care) with those who began maintenance dialysis. They found that patients with ischemic heart disease or more than 1 comorbidity who chose conservative care had the same survival as patients who started dialysis. It was uncommon for the conservative care patients to develop uremic symptoms, and when they died they often had nonuremic deaths. These data support the contention that the initiation of dialysis is of questionable value in a subpopulation of dialysis patients. Elderly patients with comorbidities may receive no survival benefit from dialysis and spend the last 6 months or less of their life suffering from the medical interventions involved with starting dialysis. Geriatrics provides a model of care for patients with chronic disease in all its complex aspects, including optimizing functionality, treating symptoms, establishing goals of care, involving appropriate and shared treatment decisions, and minimizing hazards of hospitalization.4Lynn J. Teno J.M. Phillips R.S. et al.Perceptions by family members of the dying experience of older and seriously ill patients.Ann Int Med. 1997; 126: 97-106Crossref PubMed Scopus (657) Google Scholar, 5Luke R.G. Beck L.H. Gerontologizing nephrology.J Am Soc Nephrol. 1999; 10: 1824-1827PubMed Google Scholar, 6Oreopoulos D.G. Dimkovic N. Geriatric nephrology is coming of age.J Am Soc Nephrol. 2003; 14: 1099-1101Crossref PubMed Scopus (46) Google Scholar Services are created to try to keep patients at home and minimize inpatient stays. The care of Alzheimer's disease patients is a good example of this; as the disorder progresses, the transition to increased palliative care and hospice occurs. We have previously maintained that the same model should apply to other life-threatening and chronic disorders, such as ESRD.7Cohen L.M. Germain M. Brennan M. End-stage renal disease and discontinuation of dialysis.in: Morrison R.S. Meier D.E. Capello C.F. Geriatric Palliative Care. Oxford University Press, New York, NY2003: 192-202Google Scholar However, overreliance on the technological advances of nephrology has hitherto obscured these basic geriatric principles. Dialysis patients have a higher mortality rate than people who have HIV and most cancers. They also have among the highest symptom burden and hospitalization rate of any patient group. Pain, sleep disturbances, fatigue, and pruritus are extremely common. Hemodialysis treatment-related hypotension, cramps, nausea, vomiting, and posttreatment fatigue complicate up to 40% of treatments. Although many patients have few dialysis-related symptoms, a significant minority has recurrent and multiple symptoms.8Murtagh F.E. Addington-Hall J. Higginson I.J. The prevalence of symptoms in end-stage renal disease: A systematic review.Adv Chronic Kidney Dis. 2007; 14: 82-99Abstract Full Text Full Text PDF PubMed Scopus (628) Google Scholar Based on this information, patients could be better served with a palliative focus to their care. In the past, the life-saving aspect of dialysis has overshadowed the significant need for symptom relief and end-of-life care. Over the past 10 years, research and programmatic development have begun to change this situation. Since the seminal article by Neu and Kjellstrand9Neu S. Kjellstrand C.M. Stopping long-term dialysis: An empirical study of withdrawal of life-supporting treatment.N Engl J Med. 1986; 314: 14-20Crossref PubMed Scopus (261) Google Scholar on dialysis withdrawal, research has supported the role of dialysis withdrawal in a “good death.”10Murtagh F. Cohen L.M. Germain M.J. Dialysis discontinuation: Quo vadis?.Adv Chronic Kidney Dis. 2007; 14: 379-401Abstract Full Text Full Text PDF PubMed Scopus (39) Google Scholar, 11Germain M. Cohen L.M. Nephrology.in: Kuebler K.K. Davis M.P. Moore C. Palliative Practices: A Multidisciplinary Approach. Elsevier, Philadelphia, PA2005: 181-195Google Scholar In 2002, national guidelines were developed by the Renal Physicians Association/American Society of Nephrology on shared decision making in withholding and withdrawal from dialysis.12RPA/ASN shared decision making in withholding and withdrawal from dialysis: Clinical Practice Guidelines RPA 1999. Available at: http://www.kidneyeol.org/M-PA%20and%20ASN%20Clinical%20Practice%20Guidelines.doc. Accessed February 8, 2008Google Scholar The Robert Wood Johnson Foundation supported a national multidisciplinary work group that developed a number of work products in professional education, advanced care planning, dialysis unit policy, and symptom management.13Promoting excellence in end-of-life-care ESRD Workgroup Recommendations to the field RWJ Foundation. Available at: http://www.promotingexcellence.org/files/public/esrd_full_report.pdf. Accessed February 8, 2008Google Scholar The foundation also gave a 3-year grant for programmatic development of a model Renal Palliative Care Initiative.14Cohen L.M. Planning of a renal palliative care program and its components.in: Chambers E.J. Germain M. Brown E. Supportive and Palliative Care for Renal Patients. Oxford University Press, London2004: 27-34Google Scholar Recently, a textbook on renal palliative care has been published,15Chambers E.J. Germain M. Brown E. Supportive and Palliative Care for Renal Patients. Oxford University Press, London2004Google Scholar and a national coalition for end-of-life care for kidney patients formed and has posted a web site with a growing suite of resources.16Kidney EOL coalition website. Available at: http://www.kidneyeol.org/dialysis.htm. Accessed February 8, 2008Google Scholar The coalition has further developed pain-management guidelines. As a result of the growing emphasis or renal palliative care, there is evidence of increased awareness and acceptance of hospice and palliative medicine among nephrologists.17Holley J.L. Davison S.N. Moss A.H. Nephrologists' changing practices in reported end-of-life decision-making.Clin J Am Soc Nephrol. 2007; 2: 107-111Crossref PubMed Scopus (50) Google Scholar Despite these advances, there are significant barriers to adequate palliative care in the dialysis population. This occurs despite the near certainty of death at a mean of 8 days after dialysis termination. Consequently, hospice services have come to be recognized as one of the fundamental and necessary components of a comprehensive renal palliative care program.18Holley J.L. Palliative care in end-stage renal disease: Illness trajectories, communication, and hospice use.Adv Chronic Kidney Dis. 2007; 14: 402-408Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar There is budding recognition in the kidney community that hospice services represent a widely available but underused resource for the better treatment and symptom management of this aging population,19Emanuel E.J. Care for dying patients.Lancet. 1997; 349: 1714Abstract Full Text Full Text PDF PubMed Scopus (17) Google Scholar, 20Cohen L.M. Suicide, hastening death, and psychiatry.Arch Intern Med. 1998; 158: 1973-1976Crossref PubMed Scopus (26) Google Scholar, 21Soltys F.G. Brookins M. Seney J. Why hospice? The case for ESRD patients and their families.ANNA J. 1998; 25: 619-624PubMed Google Scholar and the Medicare Payment Advisory Commission has concluded that hospice services are underused by patients with ESRD.22Medicare Payment Advisory Commission Report to the Congress: New Approaches in Medicare. MedPAC, Washington, DC2004Google Scholar In 2002, the Renal Physicians Association/American Society of Nephrology position statement on Quality Care at the End of Life included the following: “After a decision is made to forgo dialysis, the renal team should refer the patient to a hospice and adopt a palliative care approach to patient care. In either case, the nephrologist and other members of the renal team should remain active in the patient's care to maintain continuity of relationships and treatment.”23RPA/ASN Position Paper: Quality Care at the End of Life. Available at: http://www.renalmd.org/members_online/members/downloads/RPAASN_PositiononQualityCareattheEndofLiferevised.pdf 2002. Accessed February 8, 2008Google Scholar A similar philosophy was evident in 2002 when the Robert Wood Johnson Foundation's Promoting Excellence in End of Life Care program sponsored the End-Stage Renal Disease Workgroup, and it suggested that the USRDS begin formally tracking hospice services.13Promoting excellence in end-of-life-care ESRD Workgroup Recommendations to the field RWJ Foundation. Available at: http://www.promotingexcellence.org/files/public/esrd_full_report.pdf. Accessed February 8, 2008Google Scholar In October 2004, the workgroup's recommendation was implemented, and the death certificate form was changed to include a question about hospice. Hospice referral for ESRD patients is now subtly reinforced every time nephrologists complete these forms, and accurate information about referral rates should soon become available. Until now, the only research study to examine this subject is that of Murray et al.24Murray A.M. Arko C. Chen S.-C. et al.Use of hospice in the United States dialysis population.Clin J Am Soc Nephrol. 2006; 1: 1248-1255Crossref PubMed Scopus (123) Google Scholar Using USRDS data and Center for Medicare and Medicaid Services (CMS) hospice claims Standard Analytical Files, they examined data from the 115,239 ESRD deaths that took place between January 2001 and December 2002; dialysis discontinuation preceded death in 21.8% of these cases. The investigators reported that 13.5% of the sample of dialysis patients was enrolled in hospice before death, and this included 42% of the patients who stopped dialysis. Among patients who withdrew from dialysis and used hospice, median cost of per-patient care during the last week of life was $1,858 compared with $4,878 for nonhospice patients (P < .001). Hospitalization costs accounted for most of that difference, and only 22.9% of dialysis hospice patients died in the hospital compared with 69.0% of nonhospice patients (P < .001). It is important to appreciate that the hospice service estimates of Murray et al24Murray A.M. Arko C. Chen S.-C. et al.Use of hospice in the United States dialysis population.Clin J Am Soc Nephrol. 2006; 1: 1248-1255Crossref PubMed Scopus (123) Google Scholar for the ESRD population are only half that of national figures for overall deaths in the United States (22%) and one fourth that for people dying from cancer (60%). The authors' conclusion is that dying ESRD patients are receiving a disproportionately low amount of hospice care. Table 1 lists some of the contributing factors to low utilization of hospice in the ESRD population. The first and probably most important factor has to do with finances. In 2006, 24.5% of dialysis deaths were preceded by treatment withdrawal, and all of those patients potentially could have received hospice services. The financial concern for hospices (which rely on a modest all-inclusive daily rate from CMS) is that they incur higher costs in the first week of initiating hospice services. Because the average survival is about 8 days after withdrawal from dialysis,25Germain M.J. Cohen L.M. Davison S.N. Withholding and withdrawal from dialysis: What we know about how our patients die.Semin Dial. 2007; 20: 195-199Crossref PubMed Scopus (47) Google Scholar this does not allow the hospice enough time to recoup the financial losses from the first week.Table 1Barriers to the Provision of Hospice Services for ESRD PatientsFinancial disincentives and confusion about coverageLack of patient awareness of life-limiting nature of ESRD results in some people not wanting to discuss end-of-life issuesHospices recognize that for many individuals the “H” word is synonymous with death and the loss of hopeMany dialysis patients lack family or loved ones who are involved in their care and are not in a position to be best managed at homeThe trajectory of illness in dialysis is marked by a slow overall decline punctuated by catastrophic events and then (partial) recovery in contrast with a sharp and obvious deteriorationNephrologists and dialysis staff often do not know that dialysis patients with a non–renal-related terminal diagnosis can receive hospice benefits alongside ESRD benefits.Hospice providers lack familiarity with ESRD patients and their issuesThe hospice industry is undergoing a remarkable period of expansion and turmoil Open table in a new tab A more realistic concern involves the severely ill patient with ESRD who wishes to continue dialysis. The high cost of paying for dialysis treatment out of the daily hospice rate leads some, but certainly not all, hospices to be disinclined to offer coverage. If the patient's terminal diagnosis differs from that which originally caused the ESRD (eg, cancer), then CMS will continue to cover the cost of dialysis and will also separately fund the cost of hospice services. This is detailed in the Medicare Benefit Policy Manual, which states “If the patient's terminal condition is not related to ESRD, the patient may receive covered services under both the ESRD benefit and the hospice benefit.” A patient does not need to stop dialysis treatment to receive care under the hospice benefit. Consequently, hospice agencies can provide hospice services to patients who wish to continue dialysis treatment in most instances.26Medicare Benefit Policy Manual. Chapter 11. End Stage Renal Disease. 50.6.1.4–Coverage Under the Hospice Benefit (Rev. 1, 10-01-03). Available at: http://www.cms.hhs.gov/manuals/Downloads/bp102c11.pdf. Accessed February 8, 2008Google Scholar The hospice benefit is administered by 5 regional fiscal intermediaries (FIs). These FIs have their own local coverage decisions (LCDs) that interpret the Medicare hospice benefit. In addition, CMS may issue a national coverage decision that may be interpreted differently by the FIs. In the case of hospice and dialysis patients, there has been confusion regarding interpretation of the hospice benefit by both the FIs and the hospices. In some hospices, it is assumed (incorrectly) that the hospice benefit is not available if a dialysis patient continues dialysis. In other larger hospices, they have paid for dialysis out of hospice funds when dialysis is continued. Much of the confusion surrounds the issue of “related diagnoses.” If the terminal diagnosis for hospice is “related” to the ESRD diagnosis, then the hospice and the ESRD benefit cannot both be paid. If, on the other hand, the diagnoses are unrelated (ie, cancer for the hospice diagnosis and diabetic nephropathy for the ESRD diagnosis), both benefits will be paid separately. The confusion arises when it is not clear if the diagnoses are “related.” One of the FIs seeks to clarify this confusion with a proposed LCD that focuses on the functional needs of a dying patient rather that the diagnosis alone. Under a new law, the FIs (part A Medicare) and carriers (part B Medicare) are combined into regional “Medicare administrative contractors.” The Medicare administrative contractors will reissue LCDs that may differ from the current LCDs. Despite the confusion surrounding hospice coverage for dying patients who chose to continue dialysis, we would like to again emphasize that there should be no financial barrier to providing hospice services for patients who discontinue dialysis. However, the circumstances of dialysis discontinuation pose their own barriers for hospice referral. Because these decisions often occur during catastrophic hospitalizations, families are realistically hesitant about taking patients out of the hospital and bringing them home. In addition, because survival time is very brief, hospice staff recognizes that they will be unable to forge solid working relationships with patients and loved ones and will not likely provide them with maximum care. In Cohen and Germain's demonstration project, The Baystate Renal Palliative Care Initiative, hospice referral is a basic component, along with the use of formalized symptom management protocols, implementation of advance directives, and annual memorial services (Table 2).13Promoting excellence in end-of-life-care ESRD Workgroup Recommendations to the field RWJ Foundation. Available at: http://www.promotingexcellence.org/files/public/esrd_full_report.pdf. Accessed February 8, 2008Google ScholarTable 2Components of a Palliative Care Program as Outlined in the Renal Palliative Care InitiativeA palliative care focus that starts and the beginning of the patient's disease has been called supportive care to emphasize that palliative care, although appropriately more intensive at end-of-life, should begin when the patient is first seen by the medical care team.Advanced care planning: more important than completion of a document is the discussion that takes place between the patient and the health care proxy (HCP). The health care team can help direct this discussion by asking appropriate questions of the patient and HCP.28Perkins H.S. Controlling death: The false promise of advance directives.Ann Intern Med. 2007; 147: 51-57Crossref PubMed Scopus (286) Google Scholar, 29Davison S.N. Facilitating advance care planning for patients with end-stage renal disease: The patient perspective.Clin J Am Soc Nephrol. 2006; 1: 1023-11028Crossref PubMed Scopus (130) Google Scholar Physician Orders for Life Sustaining Treatment is an important tool in dialysis units to ensure that a patient's wishes are honored for do not resuscitate in the unit and hospital.30Physician Orders for Life Sustaining Treatments. Available at: http://www.ohsu.edu/ethics/polst/. Accessed February 8, 2008Google ScholarSymptom relief: attention to patient's symptoms and easy availability of treatment algorithms in the dialysis order book can improve patient's quality of life by decreasing suffering. The End-of-Life Coalition project on pain management guidelines will offer a useful tool to the dialysis care team to manage the most burdensome of all symptoms for dialysis patients.16Kidney EOL coalition website. Available at: http://www.kidneyeol.org/dialysis.htm. Accessed February 8, 2008Google Scholar Wiesbord has shown that pain and symptom burden in dialysis patients is associated with impaired quality of life.31Weisbord Fried L.F. Arnold R.M. et al.Prevalence, severity and importance of physical and emotional symptoms in chronic hemodialysis patients.J Am Soc Nephrol. 2005; 16: 2487-2494Crossref PubMed Scopus (372) Google ScholarA palliative care focus at dialysis units' monthly meetings: patients with deteriorating health and high-symptom burden can be discussed at these meetings, and the multidisciplinary team can garner the appropriate resources to address the patients' needs.Yearly memorial service: many dialysis units have found this an important bereavement tool for family members, staff, and current patient.Ensuring the patient is able to die as they wish: early referral to hospice and the option of dialysis withdrawal. Attention to religious/spiritual/existential issues, allowing time for goodbyes to family and friends, and closure on financial and intrapersonal conflicts contribute to a good death. Open table in a new tab This year, Cohen and Germain have also initiated a federally funded exploratory intervention study called “Sharing the Caring.” In this study, high-risk patients are identified by using the Charlson Comorbidity Index, serum albumin, and nephrologist estimate of death in 6 months. A multidisciplinary team then works with the patient and family to encourage hospice referral and establish goals of care at end of life. The study is finding that the barriers listed in Table 1 are a considerable problem, and they will likely remain so unless the Renal Physicians Association, American Society of Nephrology, and other organizations within the dialysis community collaborate in attempting to change legislature and insurance criteria in order to more readily fund concomitant hospice and dialysis treatment of dying ESRD patients. When elderly patients with a poor prognosis are identified with CKD, we should explain the limitations of dialysis to the patient and family, the likelihood that survival may not be improved, and that much suffering can result from the initiation of dialysis. Palliative care and hospice should be offered. The high symptom burden of dialysis patients should be treated aggressively. Careful attention should be paid to complaints about pain. Management should take into account the special dosage requirement of patients with impaired kidney function. All patients who withdraw from dialysis should receive the maximal palliative care available, including hospice services. This will improve the likelihood that patients will have a peaceful death in a place of their choosing. The dying dialysis patient who chooses to continue dialysis should receive maximal palliative care and should be referred to hospice services. It is clear that in order to best serve our patients and help them make appropriate choices for EOL care, improvements in our knowledge and practice will need to take place. We will need more accurate prognostic tools so we can better inform our patients concerning their health trajectory. We need to improve our communication skills so we can hold prognostic discussions in a nonthreatening manner, thus allowing patients and family to make the most appropriate choices. Finally, changes in the payment rules for end-of-life and hospice care need to be made in order to allow unencumbered access to these services. In an important review of palliative medicine, the geriatricians, Morrison and Meier,27Morrison R.S. Meier D.E. Palliative care.N Engl J Med. 2004; 350: 2582-2590Crossref PubMed Scopus (188) Google Scholar state the following: “Studies suggest that referral to palliative care programs and hospice results in beneficial effects on patients' symptoms, reduced hospital costs, a greater likelihood of death at home, and a higher level of patient and family satisfaction than do conventional care.” It is to be hoped that in the near future the barriers faced by severely ill patients with ESRD can be overcome and that this patient population will similarly experience these significant benefits. The future direction of research and education in renal palliative care should help bring these issues into closer focus.