chronic kidney Disease: challenging Hospices to Assure Access

by larry beresford
o Jane Duncan, hospice was a godsend. When she enrolled with Hospice Care Corporation (Arthurdale, WV), Duncan had been on three-times-a-week dialysis treatment for six years, following a long struggle with complications from diabetes and heart disease that included the amputation of one leg . She was interviewed in her kitchen in 2006, as neighbors and friends dropped by for visits. For dialysis patients, hospice is the last best hope. It helps with the sores you get from head to toe, but the most important thing is the focus on you as a person, she said. Theyre always so positive and uplifting. But Duncan was apprehensive at first. My thought of hospice was death. I found out differently. Its so much more than that.
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June 2008
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There will be an end to dialysis, Duncan said, noting that she had seen many of her peers on dialysis die, a few of them in their chair at the dialysis center. But in the meantime, why shouldnt we have the support that hospice offers? I would hate to think that we couldnt get the same kind of spiritual and medical support, and the knowledge that our families will be comforted after we die. Duncan died in her daughters home a few months after the interview. For Malene Davis, then CEO of Hospice Care Corporation, her story epitomizes the challenge facing American hospices in serving patients with chronic kidney disease (commonly referred to as end-stage renal disease or ESRD). Todays hospices must find ways to admit eligible patients with CKD, including those still receiving treatments at a Medicare-certified dialysis center and, in some cases, to pay for the dialysis. Jane said to us, Wait a minute, dont I deserve hospice care, too? Davis, now CEO of Capital Hospice (based in Falls Church, VA), has been a champion of the rights of eligible, terminally ill patients with CKD to receive access to hospice care . She chairs the hospice work group of the national Kidney Endof-Life Coalition,1 an organization that promotes dialogue about end-of-life care among dialysis centers, nephrologists, hospices and other health professionals . While in West Virginia, Davis worked closely with Dr. Alvin (Woody) Moss. Moss, who is a nephrologist at the West Virginia University School of Medicine in Morgantown . chaired the ESRD Work Group convened by the Robert Wood Johnson Foundations project, Promoting 38 Newsline

Excellence in End-of-Life Care. Woody understands the nuances of CKD, and has studied the barriers, Davis says. He showed me the data and helped me to understand that there was a large population of patients who sorely needed hospice care and werent getting it. Nearly 100,000 dialysis patients die every year, and only about 15 percent of them receive hospice care. An estimated 20 million Americans have kidney disease . Most of them never even begin dialysis; many will die first from complications of the disease or co-morbidities. For patients on dialysis at the time of their death, only 3 percent receive hospice and for those who choose to stop dialysis, only 42 percent use hospice, even though 96 percent of them will be dead within a month . However, if hospices are not establishing collaborative dialogues with the dialysis centers in their communities, it will be harder to bring up hospice as a care option when patients decide to stop dialysis. Twenty-five percent of patients who stop dialysis and get referred to hospice care, refuse the service, which lets you know that there is a need for education, Moss notes. However, this picture is gradually improving .2 Hospices have a lot to offer to kidney patients, he says. They are familiar with advance directives and bereavement issues and could do in-services for dialysis center staff . They also understand pain management, and pain is a significantand undertreatedsymptom for dialysis patients. Hospices can help nephrologists with their most difficult cases; however, first they need to demonstrate that they can be helpful .

Other Hospices confront ckD

For Hospice of Hope (Maysville, KY), it was an NHPCO educational session that inspired Pam Tribby, director of admissions, to reach out to the dialysis centers in her hospices service area . Her goal was to encourage hospice referrals of eligible patients and explore a possible contract for dialysis services for hospice patients. In the past, referrals were made when patients decided to stop the treatment and these referrals were rare, perhaps due to uneasiness by dialysis center staff. The hospice also cared for patients continuing to receive dialysis unrelated to their admitting diagnosis, although without a lot of collaboration between the two providers around the dialysis treatments . Conversations regarding mutual education, advance care planning and a hospice contract proceeded very slowly, Tribby says. Because the hospice was establishing a home-based palliative care service in the spring of 2007, offering palliative care consultations to help with symptom management for patients receiving dialysis seemed a feasible interim step . But obtaining privileges from the dialysis centers for Kathy Egan, the hospice programs palliative care nurse practitioner, took months. Now Egan has privileges to provide consultations in two local dialysis centers, billing Medicare Part B for this service. The palliative care consultations require a physicians consent and are most often ordered for pain management. Its a small program, Egan says. Were taking baby steps. I went to meet with the centers wearing a new hatexplaining that Im employed by hospice but providing palliative care consultations.

Nearly 100,000 dialysis patients die every year, and only about 15 percent of them receive hospice care.

Managing the complex cases

Hospice of Dayton, a community-based provider in Ohio with a census of approximately 600 patients, approaches these questions on a case-by-case basis. The goal is to assure access, regardless of diagnosis, for patients who are certified as terminally ill, who want hospice, and who live within the agencys service area, says CEO Deborah Dailey. If appropriate management of these patients includes dialysis, Dailey notes, were going to pay for it under a contract with a local dialysis center, detailing the medical management and payment mechanism. Dialysis is not inexpensive, Dailey adds, and it is not a cheery thing for the patient to go through. It requires discussion with the patient and physician regarding goals of care . The other approach used by Hospice of Dayton is to follow
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hospice patients on dialysis with complex care review, along with other high-risk patients, those receiving chemotherapy, coumadin or dobutamine, or those with complex psychosocial needs . Complex patients are seen more frequently by the hospices medical directors and advanced practice nurses (APNs), receiving special review every two weeks in recognition of the fact that they fall outside of the norm of hospice patients . We want to make sure theyre getting what they need, Dailey explains. What is their quality of life? Is the treatment helping or causing pain? Are we doing what is necessary to alleviate suffering caused by the treatment? What are the desired outcomes, and are we achieving them? And is this still what the patient wants? Hospice of Dayton emphasizes disease management, outcomes-based care, and the demonstration of clinical competencies by staff. It employs a focused care team of APNs and other specialists to provide education and consultation to clinical staff on complex cases . The bottom line: in order to effectively care for complex patients, we need to have specialized resources, Dailey says. Its like pediatrics. If you dont do enough of it, its hard to keep your skills up. Larry Beresford is a freelance writer who has authored numerous articles on end-of-life care. References: 1 See www .kidneyeol .org for information on this group and a variety of professional resources . 2 Moss AH . Personal communication . ESRD Network #1 Study, submitted for publication.

NHPCO Targets Access and Quality of Care for CKD

Chronic Kidney Disease (often referred to as End Stage Renal Disease) is the next non-cancer diagnosis being addressed by NHPCO as part of its Inclusion and Access initiative . The goal of this initiative is to develop resources, tools and recommendations that encourage hospices to increase access for eligible patients in a high-quality manner . Dr. Alvin Moss, a nephrologist at the West Virginia University School of Medicine, and other researchers are currently at work on better prognostic criteria for CKD. NHPCO, in turn, is in dialog with the fiscal intermediaries of the Centers for Medicare and Medicaid Services to clarify hospice eligibility criteria for this population . While this work is an important step toward increasing access for CKD patients, it is but one step. Malene Davis, CEO of Capital Hospice (based in Falls Church, VA) and chair of NHPCOs board of directors, frequently presents at educational programs sponsored by regional networks of dialysis centers. I tell them, if your local hospice isnt calling you, you should be calling them, she says. Everywhere Ive gone, people have said to me, Oh my gosh, were doing this wrong. Weve got to get the message out that hospices can care for these patients. But, according to Davis, it isnt easy because there isnt a single solution to the needs of CKD patients . Hospices will need to examine their philosophy of care and admission practices, and reconcile those with the eligibility criteria promulgated by their regional fiscal intermediary. Check in regularly at nhpco.org/access to view the ever-expanding list of resources for non-cancer diagnoses. Materials on CKD should be posted later this summer .

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