Importance of discussing all options early as part of advance care planning for patients with CKD

Issue: February 2019

ByJennifer S. Scherer, MD

Editor’s note: This is the third article in a series on supportive care. Previous articles were in the November 2018 and January 2019 issues of Nephrology News & Issues.

A diagnosis of serious kidney disease represents a significant change of life for patients and families. Evidence shows that the 700,000 Americans diagnosed with ESRD and the 14.8% of the population with chronic kidney disease often live with poor quality of life due to an elevated symptom burden.^1,2 Pain, itch, insomnia, anxiety and restless legs syndrome are all common symptoms of advanced CKD, particularly for those on dialysis. This symptom burden intrudes upon a patient’s ability to engage in daily activities in addition to the toll of three times-a-week dialysis sessions.

The realities of daily life on dialysis come despite renal replacement therapy often being offered as a restorative treatment to frail patients, commonly without other options fully discussed.³ The experience of decision-making for this population and life with kidney disease can be improved. With more attention to quality of life, as well as conversations about treatment choices early in the trajectory of CKD, the nephrology community has an opportunity to create practice change that can significantly impact the patient experience with kidney disease.

Path for patients

How does a nephrologist begin to make this practice change happen? The process of planning for the future, or advance care planning, includes not only dialysis decision-making, but also plans for end-of-life care. The first step is to build upon the relationships nephrologists often form while caring for patients with serious kidney disease throughout its natural trajectory. This can often be several years. One study shows that patients on dialysis want to turn to their nephrology team for conversations about their future, representing a large amount of trust in their kidney team, but few report that these conversations occur.⁴ The reality is many patients often start dialysis believing it is the only treatment option available to them for ESRD. This is a missed opportunity for informed decision-making, especially for patients who are elderly and highly comorbid where dialysis may not be the best treatment option and certainly is not the only choice.

A non-dialytic approach does exist for patients, known as conservative management. This is also called comprehensive conservative care or medical management without dialysis. In contrast to dialysis, conservative management of ESRD is defined as non-dialytic medical care that focuses on symptom control, quality of life, and individual preferences and goals rather than life extension. The practice of conservative management draws heavily upon the principles of palliative care, a specialty that focuses on quality of life and informed decision-making for patients with serious illness. Although evidence for conservative management is in its infancy, observational single-centered studies show that for those who are elderly and highly comorbid, dialysis initiation may not result in a large, if any, survival advantage.^5-8 When dialysis initiation does lead to life extension, observational evidence shows that this often comes at the expense of quality of life, decreased functional status, increased hospitalizations and decreased likelihood of dying at home.^9,10 Although this may be a choice some patients prefer, there is an obligation to assure that this decision is made while being informed about the realities of life on dialysis and its clinical outcomes.

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Figure: The Serious Illness Conversation Guide can help guide nephrologists as they talk to their patients. Source: Reprinted with permission from Mandel EL, et al. CJASN 2017;doi: 10.2215/CJN.05760516.

How to create conversations

Although nephrology fellows report little palliative care training in their fellowships, resources do exist that can aid the renal provider in facilitating advance care planning conversations.¹¹ The Serious Illness Conversation Guide has been recommended for nephrologists’ discussions with their patients and can help guide nephrologists as they talk to their patients (see Figure). These conversations should address the patient’s experience with kidney disease, the severity of their symptoms, their comprehension of prognosis, and their hopes and fears of the future. These discussions can optimize the shared- dialysis decision-making for a patient and their kidney team. For patients who are not transplant candidates, the decision of dialysis initiation is even more complex as it represents how they will spend the remainder of their life. An effective dialysis decision-making conversation thus becomes one that incorporates end-of-life planning. This process can be emotionally charged for patients and families and is more effective if done in an iterative and deliberate manner in a non-chaotic setting, such as an ambulatory care visit. This points to the importance of having this conversation early in their disease trajectory, possibly at the beginning of CKD stage IV, to allow for the most time for patients and families to reflect upon the information and to obtain needed support.

The world of kidney disease is marked by laudable technological advances, yet implementation of this technology has often removed the patient from the center of care. To best serve our patients’ needs, nephrologists need to master not only the technicalities of dialysis therapies, but also the sophisticated process of guiding patients through discussion of treatment options, the realities of daily life of each choice and their goals for their future. It is a privilege to care for patients and families throughout the natural trajectory of serious kidney disease. A frank advance care planning conversation that addresses the life changes patients and families face as the disease progresses only adds to this privilege and represents an opportunity to greatly improve care.

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For more information:
Jennifer S. Scherer, MD, is an assistant professor in the division of palliative care and division of nephrology at New York University School of Medicine, in New York.

References:
1. United States Renal Data System. 2017 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. NIH, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, Maryland, 2017.
2. Weisbord SD, et al. JASN. 2005;doi.org/10.1681/ASN.2005020157.
3. Song MK, et al. Nephrol Dial Transplant. 2013;doi:10.1093/ndt/gft238.
4. Davison SN, et al. CJASN. 2010;doi.org/10.2215/CJN.05960809.
5. Carson RC, et al. CJASN. 2009;doi.org/10.2215/CJN.00510109.
6. Chandna SM, et al. Nephrol Dial Transplant. 2011;doi:10.1093/ndt/gfq630.
7. Da Silva-Gane M, et al. CJASN. 2012;doi:10.2215/CJN.01130112.
8. Hussain JA, et al. Palliative Medicine. 2013;doi:10.1177/0269216313484380.
9. Eckert K, JHPN. 2018;doi:10.1097/NJH.0000000000000444.
10. Murtagh FE, et al. Nephrol Dial Transplant. 2007;doi:10.1093/ndt/gfm153.
11. Mandel EI, et al. CJASN. 2017;doi:10.2215/CJN.05760516.

Disclosure: Scherer reports no relevant financial disclosures.