The field of medicine is recognizing the importance of patient-centered care and quality of life, thoughtfully considering patients’ values and goals so that care can be effectively tailored to support those goals, which may include the delivery of supportive or palliative care, when necessary. To this end, three “best practices” are provided: 1) nurture a shared decision-making relationship, 2) provide meticulous pain and symptom management, and 3) provide or collaborate with supportive care or hospice in the treatment of seriously ill kidney disease patients. As renal professionals, it may never be “easy” to face these issues with patients, families, and caregivers; however, applying these best practices will help in providing quality supportive, end-of-life care to patients.
Changes in defining the value of health care
Health care is in the midst of a paradigm shift. For many years, the primary goal was to extend life, sometimes at any cost, without consideration of its quality. Today, the field of medicine is moving toward an alignment with patients’ and families’ values and goals. Consistent with principles of patient-centered care, there is a concerted effort to consider what the patient wants and effectively tailor care to support their wishes. Instead of assuming that life prolongation is the single most important goal, patient-centered care helps patients and families realistically balance quality of life, comfort, and the burdens and benefits of treatments. The goals of supportive care, also referred to as palliative care, are to relieve, reduce, or prevent symptoms and support the best possible quality of life for patients and their families, while eliciting and respecting patient and family values and preferences.1 Prolonging life is not appropriate if it overrides patients’ values and is associated with intractable pain and suffering. Moreover, research has shown that, in some chronic disease states, palliative care or hospice can actually extend life while increasing patients’ health-related quality of life.2,3
The number of patients benefiting from the comprehensive symptom management and comfort care provided by hospice programs has grown rapidly over the past decades. In 2013, 47% of all Medicare beneficiaries who died used hospice – more than double the 23% who used it in 2000.4
However, this trend has been significantly slower for ESRD patients treated with dialysis. According to the most recent hospice data (2012) available from the United States Renal Data System (USRDS), only 25% of Medicare beneficiaries with ESRD received hospice care at the time of death.5 This is an improvement over the 11% who used it in 2000, but is still much lower than for many other diseases.5 This is particularly troubling when one considers that dialysis patients have some of the highest symptom burdens of any chronic disease population.6,7 Many dialysis professionals find themselves in the predicament of wanting to provide supportive care, especially symptom management and referral to hospice when appropriate, but feel ill-equipped to do so. Recent research indicates that supportive care needs are going unmet in dialysis and that many professionals are unaware of the tools and resources available that may enable them to provide such care.8
Established in 2005 by the Mid-Atlantic Renal Coalition (ESRD Network 5), the Coalition for Supportive Care of Kidney Patients (CSCKP) is a national organization of renal and palliative care health care professionals, patients, and families seeking to transform care delivery so that all patients diagnosed with advanced CKD or ESRD are offered supportive care from the time of diagnosis and are provided with all treatment options, including end-of-life and bereavement care. The CSCKP aims to create culture change that transforms the treatment of persons with kidney disease by putting every patient at the center of his or her care and integrating palliative practices throughout the care continuum. As part of this goal, the CSCKP suggests three “best practices” for managing the symptoms of ESRD.
- Nurture a shared decision making relationship
- Provide meticulous pain and symptom management
- Provide or collaborate with supportive care or hospice in the treatment of seriously ill kidney disease patients.
These best practices are particularly timely given the recent change in Medicare policy to provide reimbursement for advance care planning and the ESRD Quality Incentive Program (QIP) reporting measure focused on pain assessment.
Nurture a shared decision-making relationship
Shared decision making has been defined as a process involving at least two parties, the patient and physician, sharing information to build consensus and reach an agreement about treatment.9,10 Asking patients and their families or caregivers what they want and eliciting their values and preferences is at the heart of shared decision making. Such communication may be challenging at times, especially in a noisy dialysis facility or hectic nephrology practice; however, learning and understanding patients’ preferences and values is critically necessary so that clinicians can inform patients of their prognosis and treatment options and make recommendations to them which align with their preferences. Initially, eliciting patient preferences and goals will require some time and effort on the part of health care professionals; however, it could also lead to greater efficiency of care by allowing these professionals to focus on what is truly important to that specific patient rather than overwhelming a patient with a broad array of options which may be unimportant or unacceptable. Shared-decision making is also not a one-time event, but rather an ongoing process, as patient preferences, treatment regimen, and prognosis change. Documentation of patient preferences and values is an important part of shared decision making, so that other health care providers can honor these preferences in subsequent episodes of care. Establishing a relationship with patients from the beginning is fundamental to successful patient care and will serve all parties (e.g., patient, family, caregivers, physician, and other health care professionals) well.
Provide meticulous symptom management
Pain is a common and frequently burdensome symptom among patients with advanced kidney disease. It is estimated that approximately 50% of ESRD patients experience pain.11-13 Whether related to the dialysis treatment, the underlying pathophysiology of ESRD itself (e.g., bone disease), diabetic neuropathy, or an unrelated etiology (e.g., arthritis), it has been estimated that pain is undertreated in 75% of ESRD patients.11-13 Pain should be assessed in patients with advanced kidney disease and addressed appropriately. Treating pain in patients with kidney failure or compromised kidney function is a bit more complex because some pain medications are cleared through the kidneys and others can cause further kidney damage. The brochure, Treating Pain in Late Stage CKD & Dialysis Patients: Clinical Algorithm and Preferred Medications, can help renal professionals assess pain and, specifically, help nephrologists determine a course of treatment based on pain type (i.e., neuropathic or nociceptic). Built on the World Health Organization’s three-step analgesic ladder, this tool has been adapted to meet the specific needs of patients with advanced CKD or on dialysis.14
Not only is assessing and treating pain an essential element in caring for patients, it could possibly be tied to provider reimbursement in the future. For the first time, CMS has included pain assessment and follow-up as a reporting measure for the ESRD QIP for payment year 2018. Facilities are to report in CROWNWeb one of six conditions describing the pain assessment and (when necessary) document the follow-up plan for each qualifying patient twice during the performance period. The conditions range from 1) “pain assessment using a standardized tool is documented as positive and a follow-up plan is documented,” to 2) “no documentation of pain assessment,” and 3) “no reason is given.” As seen with other reporting measures, CMS often uses reporting measures to gather baseline data which may lead to clinical measures in subsequent payment years. For payment year 2018, there are five reporting measures that make up 10% of the total performance score.
Provide or collaborate with supportive care and hospice
Patients may benefit from specialist-level palliative care (i.e., care typically provided by a palliative care specialist or a nephrologist with palliative care training) or referral to hospice. CSCKP recommends early consultation with palliative care whenever patients have symptoms that have been difficult to manage, and referral to hospice for stage 5 CKD and ESRD patients withdrawing from treatment, not initiating dialysis, or not seeking a transplant. Hospice provides specialized palliative care for patients with a life expectancy of six months or less if the disease process takes its normal course.
The coordination of hospice care and dialysis care can be complex because the payment rules under Medicare tightly limit which patients can simultaneously access payment for dialysis and hospice. A patient entering hospice care is required to elect hospice care and forgo curative or life-sustaining medical care related to the terminal diagnosis, as determined by a hospice physician. Patients may change their minds after enrolling in hospice, revoke the hospice benefit, and return to regular Medicare benefits, including dialysis coverage. Additionally, patients may still receive standard medical care for other diagnoses unrelated to the terminal diagnosis. For example, if a patient treated with dialysis has a terminal diagnosis of lung cancer, he may be able to continue dialysis while receiving hospice care for cancer. CSCKP has developed a flowchart, Medicare Hospice Benefit & ESRD Patients (see Figure 1), to help renal professionals assess if, and when, a patient may qualify for hospice benefits.
If a patient’s terminal diagnosis is kidney failure, and he seeks to initiate or continue dialysis and enroll in hospice, the patient is not eligible for both the Medicare hospice and the Medicare ESRD benefits. The hospice organization would be responsible for paying for dialysis if the patient’s terminal diagnosis is kidney failure and dialysis treatment is provided. The hospice would not be reimbursed by Medicare for the cost of dialysis. This is because the Medicare hospice benefit was constructed to be an all-encompassing benefit designed to provide all services patients need for comfort at the end of life. While hospice organizations make a conscientious effort to include comprehensive services needed by patients, the financial realities of reimbursement require many hospices to limit very expensive treatments, such as dialysis. Most hospices are severely limited in their financial capacity to pay for dialysis care, and thus most require patients to forgo dialysis before hospice admission. Nevertheless, it is critically important to check with all hospices in your community if you have a patient wishing to continue dialysis during hospice care for ESRD as some hospice organizations, drawing on charitable funding, offer more flexible policies toward dialysis for patients whose terminal diagnosis is ESRD.
Conversely, if the terminal diagnosis is unrelated to kidney failure, patients may be dually eligible for hospice care and dialysis treatment. Medicare permits simultaneous payments to the hospice organization for hospice care and to the dialysis provider for dialysis and related ESRD care, again, only if the terminal diagnosis is unrelated to kidney failure. In 2015, at the urging of CSCKP and other nephrology organizations, CMS reaffirmed that patients who have a separate (non-ESRD) terminal diagnosis may continue to draw from both payment streams—“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. Hospice agencies can provide hospice services to patients who wish to continue dialysis treatment.”15
Just as dialysis organizations are addressing reductions in reimbursements, so too are hospice organizations. For instance, hospices are under increasing pressure from Medicare to justify any expenses that are billed to Medicare outside of the hospice benefit. Additional documentation and rationale may be required to adequately determine whether or not a patient is eligible for hospice and which reimbursement streams may be used.
While it may never be “easy” to face these issues with patients, families, and caregivers, CSCKP hopes the best practices and tools outlined in this article, also available at www.kidneysupportivecare.org, will be helpful to renal professionals in providing quality supportive and end-of-life care to their patients. Encouraging and participating in shared decision making with patients and their loved ones can help all involved create an approach to care with which everyone is comfortable. The relationships formed through shared decision making will help keep the lines of communication open, which is essential as needs and prognosis change. This type of health care provider/patient relationship may also encourage patients to share more about their symptoms, as not all patients are forthcoming about their symptoms or pain, and thereby facilitate better assessment and treatment by clinicians. Working with a palliative care specialist may be necessary when symptoms become more challenging to manage and referral to hospice may need to be considered. Helping patients, families, and caregivers understand their options, assisting them in completing advance care plans, and ultimately respecting their wishes are all encompassed within the delivery of patient-centered care.
- Temel JA., et al. Early palliative care for patients with metastatic non–small-cell lung cancer. NEJM 2010; 363:733-742.
- Medicare Payment Advisory Commission. June 2015 Data Book: Other Services. Washington; 2015. doi:10.1017/CBO9781107415324.004.
- United States Renal Data System. 2015 annual data report: Epidemiology of kidney disease in the United States. Chapter 12: End-of-life care for patients with end-stage renal disease: 2000-2012. Bethesda, Md.
- Germain MJ, Davison SN, Moss AH. When enough is enough: the nephrologist’s responsibility in ordering dialysis treatments. AJKD. 2011;58(1):135-143.
- Schell JO, Arnold RM. NephroTalk: Communication Tools to Enhance Patient‐Centered Care. Paper presented at: Seminars in dialysis 2012.
- Culp S, Lupu D, Arenella C, Armistead N, Moss AH. (2015). Unmet supportive care needs in US dialysis centers and lack of knowledge of available resources to address them. J Pain Symptom Manage. 2015 Dec 17. pii: S0885-3924(15)00968-9. doi: 10.1016/j.jpainsymman.2015.11.017. [Epub ahead of print]
- Charles C, Gafni A, Whelan T. (1997). Shared decision-making in the medical encounter: what does it mean (or, it takes at least two to tango) Social Science & Medicine. 1997;44(5), 681-692.
- Barry MJ, Edgman-Levitan S. Shared decision making––pinnacle of patient-centered care. NEJM. 2012 Mar 1;366(9):780-781.
- Davison SN. Pain in hemodialysis patients: Prevalence, cause, severity, and management. Am J Kidney Dis, 42:1239-1247, 2003.
- Barakzoy AS, Moss A. Efficacy of the World Health Organization Analgesic Ladder to treat pain in end-stage renal disease. J Am Soc Nephrol. 2006;17:3198-3203
- Bailie GR, et al. Analgesic prescription patterns among hemodialysis patients in the DOPPS: potential for underprescription. Kidney Int. 2004 Jun 30;65(6):2419-25.
- Centers for Medicare & Medicaid Services. Department of Health & Human Services Centers for Medicare & Medicaid Services. Medicare Benefit Policy Manual, Chapter 11 End Stage Renal Disease 40.B (pg. 37) – Coverage under the Hospice Benefit (Rev. 219, 01-13-16). https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Downloads/bp102c11.pdf