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Coalition for Supportive Care of Kidney Patients: June 2024
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The Coalition is hosting its first session on July 25 at 5:30 PM EDT time. We welcome anyone to present their program or process (5 min) during this session allowing time for attendees to ask questions etc.
Please forward to anyone who may be interested.
If you are not able to attend but have thoughts on how the Coalition can support you, your patients, and their families, please reach out to Christine Corbett, Executive Director, at kidneycoalition@email.gwu.edu.
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The House Ways and Means Committee is considering legislation to allow concurrent care (dialysis and hospice together). Rep. Earl Blumenauer (D-Oregon) is drafting a landmark bill that, if enacted, would represent the most significant reforms to date for hospice payment and oversight.
Blumenauer announced the bill, the Hospice Care Accountability, Reform, and Enforcement (Hospice CARE) Act, on Thursday, June 13 at the Hospice News Elevate conference in Washington D.C. Though the bill language is still in development, key provisions will likely include a new payment mechanism for high-acuity palliative services, changes to the per-diem payment process and actions to improve quality and combat fraud.
“We would actually stop new enrollments until we have the chance to work this through, dealing with exceptions that need to be in place. We’re very interested in developing a transitional program, so that people are able to get the type of service they need on day one,” Blumenaur said. “We’re going to take a hard look at what we’re doing with the per diem system … That’s going to have a modest amount of controversy, but I think it’s something that is long overdue and important.”
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Concurrent Hospice and Dialysis Care Legislation that is Under Consideration
The House Ways and Means Committee is considering legislation to allow concurrent care (dialysis and hospice together). The details of this legislation are still in process, but in principle it would allow for palliative dialysis with hospice services concurrently. The Coalition encourages members to write to their House representative in support of concurrent care for dialysis patients. As you know, dialysis patients receive hospice services at less than half the rate of the general Medicare population with a length of stay that is one-third that of the general Medicare population. The median length of stay is so short (5 days) that one would expect a chaotic end-of-life—it is barely enough time for patients and families to get to know the hospice team, obtain the durable medical equipment and medications they need and be educated on how to manage symptoms at the end-of-life.
The experience of both Northwest Kidney Centers & Providence Hospice of Seattle and Dialysis Clinic, Inc and UPMC demonstrated that median hospice length of stay was increased. In addition, some patients decided to stop dialysis after enrollment in concurrent care. They needed the psychological comfort of being able to stop dialysis on their own terms instead of being forced to. Amongst decedents served by the Northwest Kidney Centers Kidney Palliative Care Team, access to concurrent care has resulted in almost 50% of patients accessing hospice at end-of-life, similar to hospice access for the general Medicare population. Both CMS and MedPAC are interested in the concept of concurrent care for patients on dialysis.
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Coalition Members Present Virtually at the ANNA Conference
Drs. Christine Corbett, Dale Lupu and Liz Anderson completed an online session detailing best practices for advance care planning discussion and included details from the recent HighWAY project. Content is available from the ANNA library.
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ASN registration opens on June 26! Kidney Week is comprised of seven early programs on October 23 and the Annual Meeting taking place from October 24-27 in San Diego, CA!
Below please find some session highlights to plan for:
Person-Centered Decision-Making for Older People Choosing Dialysis
October 25th 10:30 AM PDT - 12:30 PM PDT
Location: Room 6C/F, Convention Center
Choosing Conservative Care Is Not Just Saying "No" to Dialysis
- 11:30 AM PDT - 12:00 PM PDT
- Sara N. Davison, MD, MSc
"I Want to Live to See My Grandchildren Grow Up": Enabling Realistic Expectations
- 12:00 PM PDT - 12:30 PM PDT
- Ann M. O'Hare, MD, MA
Conservative Kidney Management and Palliative Care Across the Lifespan: When Less Is More
October 26th 10:30 AM PDT - 12:30 PM PDT
Location: Ballroom 20D, Convention Center
Moderators for the following sessions: Alvin H. Moss, MD & Devika Nair, MD, MS, FASN
Integrating Conservative Management into Adult Nephrology Practice
- 10:30 AM PDT - 11:00 AM PDT
- Jane O. Shell, MD, PA
Palliative Care Approaches for Children with Kidney Diseases
- 11:00 AM PDT - 11:30 AM PDT
- Aaron G. Wightman, MD, MA
Time-Limited Trials of Dialysis: Why, When, and How?
- 11:30 AM PDT - 12:00 PM PDT
- Jennifer S. Scherer, MD, MS, FASN
A Patient's Perspective on Palliative Dialysis
- 12:00 PM PDT - 12:30 PM PDT
- David Rush
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Welcome to the Coalition's New Executive Committee Members!
The Coalition is excited to bring on two new executive committee members, Melissa Sanchez and Charlonda Thrower. This committee plays a crucial role in guiding the strategic direction of our organization and ensuring that we fulfill our mission and vision effectively.
This month we'll be spotlighting Melissa Sanchez (pictured above on the right with her grandfather)
Melissa Sanchez is a patient advocate and was a caregiver. Her grandfather Linus Titus "Smoke" Sanchez, was diagnosed with chronic kidney disease at the age of 35 years old. He battled chronic kidney disease for over 40 years of his life. Through the year's, Melissa's grandfather's kidney disease remained stable with bouts of decline subsequently followed with improvement. Melissa's caregiving journey has made her the person that she is today. She witnessed vast hardships of her grandfather as an in-center hemodialysis patient became her primary source of motivation to advocate for all kidney disease patients. Melissa currently has a career as a patient advocate at a health system and is a Kidney Advocacy Committee Region 7 Vice/Co-Leader, a Tufts University DART Stakeholder Advisory Board member, a member of the Data Safety and Monitoring Board for the GW ExPAND trial, amongst many other accomplishments. This past February, she advocated on behalf of the National Kidney Foundation's 11th Annual Kidney Patient Summit in Washington, DC where she met face-to-face with members of Congress and their healthcare staff to provide an opportunity to bring a voice to the kidney patients, their families, and living kidney donors.
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The ExPAND Trial is Underway!
The ExPAND project, led by Drs. Dale Lupu and Alvin Moss, aims to compare two health system-based approaches for providing kidney failure treatment options to older patients with kidney failure. The goal is to ensure that these patients are actively involved in a shared decision-making (SDM) process covering a full range of choices. This way, they will have meaningful access to the full range of choices available to them.
About 20% of patients regret the decision to start dialysis, yet non-dialysis alternatives are rarely offered to them. Most patients report being unaware that they had a choice about kidney failure treatment. Older patients with kidney disease often value independence over staying alive longer, but most nephrologists are not aware of their patients' values and do not offer alternatives to standard dialysis, such as active medical management without dialysis (AMMWD), a time-limited trial of dialysis (TLT), palliative dialysis, or deciding not to decide (DND) until a later date.
Shared decision-making is recognized as the preferred approach to implementing patient-centered care and ensuring that patients receive treatment that matches their goals. There is an urgent need for strategies to increase the adoption and implementation of SDM in nephrology practices and elsewhere in healthcare systems where CKD patients receive care.
The ExPAND Project is supported through a Patient-Centered Research Outcomes Insitute (PCORI) Project Program Award. The ExPAND project is a collaboration between the GW School of Nursing, West Virginia University School of Medicine, the University of Bristol, the Coalition for the Supportive Care of Kidney Patients (CSCKP), and nine nephrology practices.
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Ernecoff NC, Kurtz EC, Pearson EM, et al. Advanced Care Planning in Chronic Kidney Disease: Qualitative Impact of the MY WAY Intervention. J Pain Symptom Manage. Published online June 5, 2024. doi:10.1016/j.jpainsymman.2024.05.030
People with chronic kidney disease (CKD) comprise one of the fastest growing serious-illness populations in the United States. Late-stage CKD carries high physical and psychological burden that can impact patient experience and outcomes. Early communication and care planning that incorporates goals and priorities can impact how patients transition to end stage kidney disease (ESKD). The MY WAY educational and patient coaching intervention aimed to promote high-quality ACP. This qualitative substudy sought to gain participant feedback on the MY WAY ACP coaching intervention, and how it impacted their wishes, perceptions of kidney care, and factors that helped them reflect on ACP.
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DONESKY D. Intentionally Interprofessional Palliative Care: Synergy in Education and Practice. OXFORD UNIV PRESS; 2024.
This text was just released this year, after several years of writing and editing from many involved. Dr. Christine Corbett is excited to share that she co-author-ed with Nephrologist/Palliative Care Physician Dr. Daniel Lam. They discussed the immersion of outpatient palliative care for patients with kidney disease. Dr. Lam's work as a 2015 Sojourns Scholar to improve palliative care access for people living with kidney disease evolved into the Kidney Palliative Care Program at Northwest Kidney Centers. Dr. Lam is board certified in Internal Medicine, Palliative Medicine, and Nephrology.
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Join Us or Recruit a Colleague
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Coalition for Supportive Care of Kidney Patients
Publication Number: CSCKP-113023
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