Discussions about the treatment choices available to patients with end-stage renal disease (ESRD) are among the most important that health care professionals can have with patients, particularly patients approaching the end of life. Renal social workers often meet with patients to aid in deciding best options, and many work with patients who choose to live with their life-threatening renal disease and its heavy burden of treatment. However, without thorough discussion of available options, patients’ values, preferences, and goals of care may go unrecognized. Patients who don’t adequately understand their alternatives may acquiesce to treatments—including chronic dialysis—without realizing that alternatives, like conservative management and palliative care, even exist. These should be presented as viable treatment options for patients with chronic kidney disease (CKD), especially those with ESRD for whom kidney transplantation is not a viable option.

Conservative management in this setting is defined as management of uremic symptoms through diet and medications, along with psychosocial support. [1] This information should be presented both in advance of starting dialysis and also to certain patients who have already started dialysis. It is incumbent upon nephrology care providers to identify ESRD patients with a high-symptom burden and those at risk of developing such burdens, and ensure that these conversations take place.

Here, we examine some of the unique challenges of dialysis and discuss trade-offs between dialysis and conservative management. We highlight several of the most serious barriers to high-quality end-of-life care discussions, review prognostication tools that can aid in identifying who stands to benefit most from conservative management, and review guidelines for having these essential conversations with ESRD patients and their surrogates.
 

Identifying the Problem

Focusing on some of the key issues with the current process, Koncicki and Schell present the case of an 80-year-old woman with diabetes, hypertension, coronary artery disease, and CKD. [2] This combination of medical comorbidities is unfortunately all too common in such patients. The patient is referred to a nephrologist because her kidney disease is worsening: she has experienced several episodes of acute kidney injury and repeated hospitalizations. She is experiencing decreased energy and appetite, has lost a significant amount of weight, and requires an aide for help with daily activities. The nephrologist explains to the patient that her kidney function is worsening and wishes to discuss her treatment options. The woman aptly asks how similar patients do on dialysis, what will happen if she does not opt for dialysis, and how any treatment will ensure that she does not suffer.

Kidney transplantation—the gold standard of treatment for patients with ESRD—is not always desired or feasible for patients, whether due to medical contraindications, the patient’s own preferences, or other considerations. As a result, many are left with a choice between undergoing chronic dialysis or conservative management. Dialysis is a life-sustaining therapy for patients with ESRD, one that can potentially prolong life by many years. For many such patients, however, dialysis can be onerous and burdensome. On the other hand, patients who opt out of dialysis will ultimately, and potentially quite quickly, die from their kidney disease or its sequelae. Choosing to pursue dialysis over conservative management is neither an easy nor a straightforward decision for patients to make. 
 

A Complex Decision

There are many factors to consider before starting dialysis. Patients with ESRD have mortality rates twice as high as patients with other serious chronic conditions such as cancer or heart failure. [3] Opting for dialysis may extend life, but dialyzed patients with ESRD still have a shorter life expectancy than the average person. Only forty percent of hemodialysis patients survive for five years, and they have mortality rates 6.1 to 7.8 times greater than age-matched controls. [4] Furthermore, research has shown that for some, particularly elderly patients and those with multiple medical comorbidities, initiating dialysis may not actually increase life expectancy at all. [5]

Given that life may not be prolonged for all who undergo dialysis, some patients ultimately choose to forgo this option. In one study, patients who chose conservative management over dialysis did so for several reasons including age, travel limitations, feeling well without dialysis, and not wanting to be a burden to others. [6] Some patients feel that dialysis comes at too high a cost in terms of the quality of life. Therefore, to ensure that decisions about dialysis are truly informed, conservative management must be presented as a viable and non-stigmatized option to all patients with ESRD.
 

Palliative Care in ESRD

More than just end-of-life or hospice care, palliative care focuses on maximizing quality of life for patients with complex and/or chronic illnesses. It offers an integrative approach—a philosophy of care—rather than a service that only provides value at the very end of life. [7] Patients with ESRD can experience a high symptom burden, leading to increased hospitalizations and decreased quality of life if not recognized and adequately managed. Many would likely benefit from palliative care consultations. Holley argues for dedicated palliative care programs for this population of patients including a systematic approach to pain and symptom assessment and management, advance care planning, psychosocial and spiritual support, hospice referrals, and bereavement programs. [8] Dialysis patients in particular have unique complexities and would benefit from the integration of palliative care into their overall care plan.

It is well documented that end-of-life care conversations do not occur often enough in the nephrology community, and improvements are necessary. [9], [10] In a national survey of nephrology fellows in the United States, researchers discovered that end-of-life care teaching was of significantly lower quality than that of overall subspecialty teaching. Furthermore, nephrologists reported that they felt unprepared to provide end-of-life guidance, despite caring for an average of fifteen dying patients each year. A similar study analyzing nephrologists’ perceptions of dialysis withdrawal and palliative care in Europe similarly reported that most participants had not recently received education on palliative care. [11] Palliative care education was found to be associated with favorable attitudes towards the withdrawal of care, leading the authors of this study to conclude that training nephrologists in end-of-life care is both important and valuable. Insufficient or inadequate training in end-of-life care in nephrology is a clear barrier to conversations about prognosis and goals of care, and to the fully informed decisions that they can beget.
 

Prognostication in ESRD

Individualized prognosis is an integral consideration when weighing the risks and benefits of starting dialysis. Understanding prognosis can help the patient, family, and medical team determine what appropriate goals of care are or should be, and inaccurate prognostic assessments can be significant barriers to achieving these goals.  Patients who wish to begin dialysis are often motivated by the possibility of extending life, for example. For older patients with multiple comorbidities, however, dialysis may neither extend life nor improve quality of life. [12] The Renal Physicians Association echoes these concerns, recommending that consideration be given to forgoing dialysis for patients with poor prognoses. [13] The “surprise question” (‘Would I be surprised if this patient died within the next six months?’) is a tool developed to trigger further thought about prognosis and the appropriateness of dialysis for patients with ESRD. [14] A negative response to the surprise question should trigger a conversation about whether initiating dialysis, or withdrawing dialysis if it has already been initiated, is appropriate and in alignment with the patient’s goals of care. The surprise question has been shown to be an accurate tool in predicting survival of dialysis patients, demonstrating that appraising which patients might benefit from a discussion about goals of care need not be time-consuming.

Appropriate identification of the goals of care of a patient with ESRD is necessary, but it is not sufficient; reassessing goals of care should be an ongoing process. In addition to the surprise question, key indicators of a patient’s declining status include increasing symptom burden, multiple hospitalizations, weight loss, isolation from family and friends, functional decline, and inability to tolerate dialysis. [15] Providers who care for patients receiving dialysis should frequently monitor for such signs, along with more subtle indicators that dialysis might no longer be meeting a patient’s goals of care.  Finally, should any patients vocalize concerns about wanting to stop dialysis, a conversation with members of the care team, patient, and other relevant stakeholders should be organized to re-evaluate goals of care and strategize the best means for achieving them.
 

End-of-Life Care Conversations

There are numerous potential approaches for how to have these tough conversations. Some argue that nephrologists should first explore larger hopes and goals with their patients, then discuss worries and concerns, and lastly explore limitations and re-evaluate goals on an ongoing basis. [16], [17] Eneanya and colleagues have developed the Shared Decision-Making Renal Supportive Care (SDM-RSC) communication intervention, which aims to improve discussions about prognosis and end-of-life care for patients with ESRD. [18] To achieve this end, the SDM-RSC looks to equip those caring for ESRD patients with the skills necessary to promote advance care planning, discussions of goals of care, and provision of care that is maximally concordant with those goals. The SDM-RSC requires hemodialysis social workers and other care providers to participate in intensive communication training, in which they share prognoses with patients and help them with advance care planning during in-person meetings using a social work-centered algorithm. Data collection for the study recently completed, but results are not yet public. This innovative multi-institutional program promises to provide an important step forward in understanding how best to communicate with patients with ESRD about their goals of care and end-of-life care preferences, and how best to ensure fully informed end-of-life decision-making for these patients going forward.
 

Conclusion

The elderly woman introduced above began dialysis but, within a short period of time, experienced numerous complications. She required several prolonged hospitalizations and was eventually discharged to a nursing home. After some time, she came to the conclusion that dialysis was overly burdensome and no longer aligned with her goals of care. She ultimately decided to stop dialysis, was transferred to hospice and died fourteen days after dialysis was stopped. [19]

Unfortunately, this patient was started on dialysis even though the nephrologist knew that she was unlikely to do well. Conservative management and palliative care would have been viable—perhaps even preferable—alternatives to dialysis for her. If the care team had provided her with this information, it is possible that her treatment would have been less burdensome and her illness trajectory quite different. Some patients with or approaching ESRD are willing to sacrifice life expectancy to reduce the burdens and restrictions of dialysis therapy. [20] If alternatives had been presented, what option would this woman have chosen? It is impossible to know if she still might have opted for dialysis once fully informed, but providing information about conservative management and palliative care is a necessary precondition for making a truly informed decision about dialysis.

It is ethically imperative that conservative management and palliative care be presented as viable and acceptable options for those considering dialysis for ESRD. Conversations about goals of care must have a central role in such decisions, and these conversations must continue throughout the care continuum. Validated prognostic markers and illness-specific guidelines can help identify which patients might benefit from a goals-of-care discussion and/or re-evaluation of current treatment plans. Finally, for some patients, introducing palliative care earlier in the disease process may help address symptom burden. Dialysis is an excellent therapy, but it is not necessarily excellent for all. With continued improvements in provider education on end-of-life care and conservative management in ESRD, we can better serve the interests of all patients with renal disease as they approach the end of life.

Courtney Sas, MSW, RSW, MBE '17, can be reached at sasc (at) smh.ca.
Jonathan Marron, MD, MPH, can be reached at jonathan_marron (at) dfci.harvard.edu.

[1] Morton, Rachael L., Paul Snelling, Angela C. Webster, John Rose, Rosemary Masterson, David W. Johnson, and Kirsten Howard. "Factors influencing patient choice of dialysis versus conservative care to treat end-stage kidney disease." Canadian Medical Association Journal 184, no. 5 (2012): E277-E283. https://doi.org/10.1503/cmaj.111355.

[2] Koncicki, Holly M., and Jane O. Schell. "Communication Skills and Decision Making for Elderly Patients With Advanced Kidney Disease: A Guide for Nephrologists." American Journal of Kidney Diseases 67, no. 4 (2016): 688-695.

[3] Saran, Rajiv, Bruce Robinson, Kevin C. Abbott, Lawrence Y.C. Agodoa, Patrick Albertus, John Ayanian, Rajesh Balkrishnan et al. "US renal data system 2016 annual data report: epidemiology of kidney disease in the United States." American Journal of Kidney Diseases 69, no. 3 (2017): A7-A8. https://doi.org/10.1053/j.ajkd.2016.12.004.

[4] Id.

[5] Murtagh, Fliss E.M,, James E. Marsh, Paul Donohoe, Nasirul J. Ekbal, Neil S. Sheerin, and Fiona E. Harris. "Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5." Nephrology Dialysis Transplantation 22, no. 7 (2007): 1955-1962. https://doi.org/10.1093/ndt/gfm153.

[6] Johnston, Sheila, and Helen Noble. "Factors influencing patients with stage 5 chronic kidney disease to opt for conservative management: a practitioner research study." Journal of Clinical Nursing 21, no. 9‐10 (2012): 1215-1222. https://doi.org/10.1111/j.1365-2702.2011.04001.x.

[7] Koncicki, Holly M., Mark Unruh, and Jane O. Schell. "Pain Management in CKD: A Guide for Nephrology Providers." American Journal of Kidney Diseases 69, no. 3 (2016): 451–460. https://doi.org/10.1053/j.ajkd.2016.08.039.

[8] Holley, Jean L. "Palliative care and withholding and withdrawing dialysis." Dialysis & Transplantation 40, no. 4 (2011): 154-155.

[9] Moss, Alvin H. "Improving end-of-life care for dialysis patients." American Journal of Kidney Diseases 45, no. 1 (2005): 209-212. https://doi.org/10.1053/j.ajkd.2004.10.010.

[10] Holley, Jean L., Sharon S. Carmody, Alvin H. Moss, Amy M. Sullivan, Lewis M. Cohen, Susan D. Block, and Robert M. Arnold. "The need for end-of-life care training in nephrology: national survey results of nephrology fellows." American Journal of Kidney Diseases 42, no. 4 (2003): 813-820. https://doi.org/10.1016/s0272-6386(03)00868-0.

[11]Van Biesen, Wim, Moniek W.M. van de Luijtgaarden, Edwina A. Brown, Jean-Pierre Michel, Barbara C. van Munster, Kitty J. Jager, and Sabine N. van der Veer. "Nephrologists' perceptions regarding dialysis withdrawal and palliative care in Europe: lessons from a European Renal Best Practice survey." Nephrology Dialysis Transplantation 30, no. 12 (2015): 1951-1958. https://doi.org/10.1093/ndt/gfv284.

[12] Koncicki, Holly M., Mark Unruh, and Jane O. Schell. "Pain Management in CKD: A Guide for Nephrology Providers." American Journal of Kidney Diseases 69, no. 3 (2016): 451–460. https://doi.org/10.1053/j.ajkd.2016.08.039.

[13] Renal Physicians Association. Shared Decision Making in the Appropriate Initiation and Withdrawal From Dialysis. 2nd ed. Rockville, MD: Renal Physicians Association, 2010.

[14] Cohen Lewis M., Robin Ruthazer, Alvin H. Moss, and Michael J. Germain. “Predicting six-month mortality for patients who are on maintenance hemodialysis.” Clinical Journal of the American Society of Nephrology 5, no. 1 (2010): 72-9. https://doi.org/10.2215/cjn.03860609.

[15] Brown, Edwina A., Elizabeth Joanna Chambers, and Celia Eggeling. "Palliative care in nephrology." Nephrology Dialysis Transplantation 23, no. 3 (2008): 789-791. https://doi.org/10.1093/ndt/gfm874.

[16] Holley, Jean L. "Palliative care in end-stage renal disease: illness trajectories, communication, and hospice use." Advances in Chronic Kidney Disease 14, no. 4 (2007): 402-408. https://doi.org/10.1053/j.ackd.2007.07.002.

[17] Schell, Jane O., Jamie A. Green, James A. Tulsky, and Robert M. Arnold. "Communication skills training for dialysis decision-making and end-of-life care in nephrology." Clinical Journal of the American Society of Nephrology 8, no. 4 (2012): 675–680. https://doi.org/10.2215/CJN.05220512.

[18] Eneanya, Nwamaka D., Sarah L. Goff, Talaya Martinez, Natalie Gutierrez, Jamie Klingensmith, John L. Griffith, Casey Garvey, et al. "Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients." BMC Palliative Care 14, no. 1 (2015): 30. https://doi.org/10.1186/s12904-015-0027-x.

[19] Koncicki, Holly M., Mark Unruh, and Jane O. Schell. "Pain Management in CKD: A Guide for Nephrology Providers." American Journal of Kidney Diseases 69, no. 3 (2016): 451–460. https://doi.org/10.1053/j.ajkd.2016.08.039.

[20] Morton, Rachael L., Paul Snelling, Angela C. Webster, John Rose, Rosemary Masterson, David W. Johnson, and Kirsten Howard. "Factors influencing patient choice of dialysis versus conservative care to treat end-stage kidney disease." Canadian Medical Association Journal 184, no. 5 (2012): E277-E283. https://doi.org/10.1503/cmaj.111355.