Tools and resources for supportive nephrology care
Editor’s Note: This is part 2 in a series of articles on supportive care in nephrology. Part 1 appeared in the November 2018 issue of Nephrology News & Issues.
In its 2015 report, Kidney Disease Improving Global Outcomes developed a roadmap for improving supportive care in nephrology. It is one of several resources published in the past few years on this subject and made available online. However, the question many kidney care professionals ask is, “What can I do tomorrow in my practice to improve care for patients with advanced kidney disease?” This article describes an approach to implementing supportive care and provides a list of several comprehensive sources with guidelines, tools, patient education materials and decision aids that can help your practice become more effective in providing supportive care.
Because it is preferred by patients, KDIGO recommended using the term “supportive care” instead of palliative care, and defined it as “services that are aimed at improving the health-related quality of life (HRQL) for patients with established CKD, at any age, and [that] can be provided together with therapies intended to prolong life, such as dialysis. Supportive care helps patients cope with living, as well as dying, regardless of life expectancy.” This article uses the term “supportive care” to refer to the services provided by the nephrology team and “palliative care” as a reference to services provided by palliative care specialists or teams, including hospices.
Implement supportive care in your practice
The major “to do” items when a practice wants to improve its supportive care include: identifying patients who are seriously ill and likely to have supportive care needs; eliciting patient goals and values – both for current care (shared decision-making) and for future care (advance care planning); managing symptoms, including psychosocial and spiritual needs; and planning and managing care transitions and end-of-life care.
The surprise question, “Would I be surprised if this patient died in the next 6 months? Or died in the next year?” has been found to be the single best predictor of early mortality in patients with CKD and ESRD. In the hands of nephrologists and nephrology nurse practitioners, if the clinician answers the question, “No, I would not be surprised,” that patient is 3.5-times more likely to be dead in the next year than if the clinician answered, “Yes, I would be surprised.” The accuracy of predicting the outcome from the surprise question for patients with a poor prognosis has been improved by adding objective measures such as age, comorbid conditions, functional status and serum albumin to create an integrated prognostic model. See Table for validated tools for estimating 6- and 12-month prognosis for patients with CKD as well as 6-, 12- and 18-month prognosis for patients on dialysis. Patients with CKD and ESRD who are estimated to have a 6 month or less likelihood of survival are appropriate candidates for supportive care interventions, including advance care planning, pain and symptom assessment and management, and possibly hospice referral.
Elicit patients’ goals and values
Ariadne Labs has developed a guide for serious illness conversations that provides patient-tested language for exploring patient understanding of their illness, providing prognostic information and exploring key topics including goals, fears and worries, sources of strength, critical abilities, trade-offs and family. Serious illness conversations may encompass both current concerns and future planning.
Advance care planning specifically targets patients’ personal values, life goals and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness such as CKD and ESRD even when they become unable to make decisions for themselves.
Advance care planning involves designating a health care surrogate who will be empowered to make decisions on the patient’s behalf if the patient becomes unable; eliciting preferences and values that the patient wants to guide his or her future care; discussing those preferences with family, health care surrogate and the medical care team; and documenting in appropriate formats so patient’s wishes are actionable and legally enforceable.
The British Columbia Provincial Renal Agency’s End-of-Life Working Group developed a comprehensive end-of-life framework including helpful advance care planning resources. They note, “Advance care planning is an effective tool for facilitating communication among patients, their families and the health care team and is integral to providing high quality dialysis care.”
Their framework offers a recommended approach for clinical teams when addressing advance care planning with patients with kidney disease. It includes the goals of advance care planning, how to identify patients who could benefit most from it, how to initiate and structure advance care planning conversations, and how to integrate it into patient care.
The Coalition for Supportive Care of Kidney Patients provides a structured curriculum for advance care planning with patients with kidney disease. The coalition also describes a five-step process for patients and families to start these conversations on their own (see Table). The table describes the following five steps the coalition recommends for patients and families: choose someone to make health care decisions for you if you get sick and cannot speak for yourself; think about what kind of health care you would want if you were unlikely to get better. Discuss your wishes with family and friends; write your wishes down in a legal form, known as an advance directive (sometimes called a “living will” or a medical power of attorney); give a copy of your advance directive to your health care agent and kidney care team. Continue talking to family about your wishes; and discuss with your kidney care team when a medical order form (usually called POLST or MOLST) might be right for you.
Manage symptoms, psychosocial and spiritual needs
Patients on in-center hemodialysis have reported that the physical symptoms of insomnia, fatigue, muscle cramping and nausea/vomiting, and the mood symptoms of anxiety and depressed mood have affected their lives the most. The more symptoms patients report, the worse they rate their quality of life. One good way to improve the quality of life for patients with CKD and ESRD is to assess and manage their symptoms. Fortunately, there are several validated tools that can help. Among the two most widely used are the ESAS-renal and the IPOS-renal.
The British Columbia Renal Agency has a helpful website for managing patients’ symptoms. It covers multiple topics, including constipation, depression and anxiety, fatigue, nausea/poor appetite, muscle cramps, pain management resources, pruritus and restless leg syndrome. This website also offers symptom assessment checklists (modified ESAS) in Punjabi, traditional Chinese, simplified Chinese and large-print English.
The Renal Supportive Care group in New South Wales, Australia has put together an evidence-based flow chart for symptom control in ESRD which gives initial recommendations for treatment of fever, pain, hiccups, dyspnea, constipation, diarrhea, excessive secretions and terminal restlessness and agitation.
Care transitions and end-of-life care
Kidney programs in other countries are ahead of the United States in offering additional options to patients with advanced CKD. Two Canadian and one Australian kidney program are particularly well-organized to offer patients with advanced CKD the option of medical management without dialysis.
The British Columbia Renal Care Agency Palliative Care has developed an approach to guide renal care in British Columbia. The website has tools and resources covering the following areas: end-of-life framework; conservative care pathway; advance care planning; recommendations for end-of-life care; and medical assistance in dying. Their Conservative Care Pathway document has a helpful checklist for staff to use in delivering care for patients who choose medical management without dialysis.
The kidney programs in Alberta, Canada have also developed a strong medical management without dialysis approach, called the Conservative Kidney Management project, for patients with advanced CKD who want it. It involves stakeholders across Alberta including nephrologists, primary care providers, nursing and allied health care professionals, patients and families. It is a collaborative effort between the Kidney Health Strategic Clinical Network of Alberta Health Services, Northern Alberta Renal Program, Southern Alberta Renal Program and Alberta Innovates Health Solutions.
Information about the program is available at www.ckmcare.com. The website presents two pathways – one for patient/family and one for professionals. The professional pathway contains tools to identify patients, assess and manage symptoms, management guidelines, advance care planning and end-of-life.
The website also offers a web-based decision aid to help patients decide whether conservative care is the right choice. The Renal Supportive Care, New South Wales, Australia program has published its results and makes information about its program available on its website.
The Renal & Hypertension Service, of St. George & Sutherland Hospitals, New South Wales, Australia, developed a website to assist in disseminating supportive nephrology practices throughout New South Wales. The comprehensive website contains professional and patient resources covering all aspects of renal supportive care, including: pain control; symptom control guideline/flow chart; advance care planning; patient information; supportive care clinic information; dialysis or not; renal support booklet; bibliography with links to key references; and a renal supportive care forum (restricted access).
Integrating supportive care into a busy nephrology practice or dialysis center may seem daunting, but the tools and websites reviewed in this article give practical and actionable approaches. Pick one small change, such as using an evidence-based decision aid or using a symptom checklist, and implement a small test with a quality improvement, rapid-cycle change approach.
If the test succeeds, you will have taken a step toward building a more patient-centered approach to care. Patients will thank you.
- 1. Abdel-Kader K, et al. Clin J Am Soc Nephrol. 2009;doi:10.2215/CJN.00430109.
- 2. Brown MA, et al. Clin J Am Soc Nephrol.2015;doi:10.2215/CJN.03330414.
- 3. Cohen LM, et al. Clin J Am Soc Nephrol.2010;10.2215/CJN.03860609.
- 4. Davison SN, et al. Kidney Int. 2015;doi:10.1038/ki.2015.110.
- 5. Flythe JE, et al. Clin J Am Soc Nephrol.2018;13(5):735-745 doi: 10.2215/CJN.10850917.
- 6. Mandel El, et al. Clin J Am Soc Nephrol.2017;doi: 10.2215/CJN.05760516.
- 7. Moss AH, et al. Clin J Am Soc Nephrol.2008;doi:10.2215/CJN.00940208.
- 8. Schmidt RJ, et al. Neph Dial Trans. 2018;doi:10.1093/ndt/gfy305. In press.
- For more information:
- Dale Lupu, MPH, PhD, is with the Center for Aging, Health & Humanities at George Washington University School of Nursing in Washington, D.C. Alvin H. Moss, MD, FAAHPM, is professor of medicine in the sections of nephrology and palliative medicine at West Virginia University School of Medicine in Morgantown, West Virginia. Disclosures: The authors report no relevant financial disclosures.