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Coalition for Supportive Care of Kidney Patients: May 2024
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Coalition's March Listening Tour Recap
Thank you to all who participated! There were several take away messages including actionable steps derived from the listening tour, focusing on specific improvements in symptom management, patient-centered care, communication and education, support for caregivers, care coordination and resource allocation.
If you were not able to participate, 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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Annual AAHPM Conference Recap
Several nephrologists, palliative care specialists, and advanced practice providers met for a Coalition supported networking session at the 2024 Annual Assembly of Hospice and Palliative Care in Phoenix Arizona in March. Topics of discussion included auto referral to palliative care for dialysis patients admitted to the hospital, continued networking virtually for like minded professionals, an introduction to the new PCORI funded ExPAND project, and facilitators to enhancing supportive care for patients with kidney disease.
Jane Schell, MD and Natalie Enecoff presented to a packed room on concurrent dialysis and hospice care, a much needed collaboration between specialties to improve quality of care for patients at end of life.
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Coalition Members Present Virtually at the ANNA Conference
Drs. Christine Corbett, Dale Lupu and Liz Anderson virtually presented on Advance Care Planning, including shared decision making tools and resources, and the HIGHWay project, at the recent 55th American Nephrology Nurses Association Spring Symposium.
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Recap: NKF Spring Clinical Meetings
The 2024 National Kidney Foundation Spring Clinical Meetings in Long Beach, CA, offered many options for increasing knowledge on the supportive care for patients with kidney disease including:
- Compassionate Care Across the Spectrum: Palliative and Supportive Kidney Care
- Burnout in the Nephrology Team: Moral Distress and Coping Technique
- It’s Not a One Size Fits All: Dialysis Quality of Care Across the Patient’s Lifespan
- Adjusting to chronic illness: Managing Anxiety and Depression
- Meeting the needs of older adults on HD: Defining standards of care
- Enhancing person centered care through effective communication-basic strategies
- Ethics and cognitive decline
- Mindfulness-Based Stress Reduction (MBSR) – A One-Day Taster Session
- Hyperphosphatemia Management: Walking the Tightrope-including shared decision making for patients with CKD- Speakers: Christine Corbett, Joanna Hudson, Kathleen Hill Gallant, Kristal Higgins
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Bring Your Expertise to the Coalition's Executive Committee!
As the Coalition continues to grow and evolve, we are seeking dedicated individuals to join our Executive Committee. This committee plays a crucial role in guiding the strategic direction of our organization and ensuring that we fulfill our mission and vision effectively.
Responsibilities
- Attend regular committee meetings quarterly to discuss and make decisions on important organizational matters and provide strategic guidance and support to the Executive Committee
- Act as ambassadors for the Coalition and promote our initiatives within the community
Qualifications
We are looking for individuals who possess:
- Demonstrated leadership experience in their respective fields
- A passion for the Coalition's mission and a commitment to its success
If you are interested in becoming a member of the Executive Committee or know someone who would be a valuable addition to our team, please submit a brief statement of interest to Christine Corbett, Executive Director, at kidneycoalition@email.gwu.edu.
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Palliative Care in Nephrology
Edited by Alvin H. Moss, MD, FACP, FAAHPM, Dale E. Lupu, MPH, PhD, Nancy C. Armistead, MPA, and Louis Diamond
- Guides readers through the core palliative skills and knowledge needed to deliver high value care for patients with life-limiting, critical, and terminal kidney disease
- Chapter topics are based on the Coalition for Supportive Care of Patients with Kidney Disease Pathways Project change package of 14 best practices
- Written by a team of international leaders in kidney palliative care
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Moss A. Nephrologists have made limited progress in offering supportive care. Nephrology News & Issues. April 15, 2024. Accessed May 20, 2024.
Dr. Alvin Moss discusses the "three remaining challenges for widespread implementation of kidney supportive care are to: 1) educate nephrology clinicians so they have buy-in that certain older patients with advanced CKD may not benefit from dialysis and that it is their ethical responsibility to inform them about active medical care without dialysis as an option; 2) train nephrology clinicians in kidney supportive care skills; and 3) develop a scalable infrastructure model for active medical care without dialysis so that patients’ symptoms are well managed, and they and their families are supported in their decision and receive treatment through the end of life that honors their wishes."
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Dr. Bhavika Gandhi understands and discusses the difficulty patients with advanced chronic kidney disease may face when it is time to make a decision about going on dialysis. Dr. Dale Lupu also contributed to this article and told Healio that "patients and their families have much to think about when it comes to making a decision about forgoing or withdrawing from treatment. Active medical care, and I emphasize the ‘active,’ is more than simply not doing dialysis. It is preserving kidney function, meticulous symptom assessment and management, and goals of care conversations so that the patient’s wishes for present and future treatment are known and respected,” Lupu said. “Active medical care without dialysis is beneficial for informed patients who choose it because it enables them to use their time and energy on activities they value most.”
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Older adults with kidney failure face preference-sensitive decision regarding dialysis initiation. Despite recommendations, few older patients with kidney failure experience shared decision-making (SDM). Clinician uncertainty about the degree to which older patients prefer to engage in decision-making remains a key barrier. This study used a mixed-methods explanatory, longitudinal, sequential design at 4 diverse U.S. centers with patients (English-fluent, aged ≥70 years, CKD stages 4-5, nondialysis) from 2018 to 2020. Patient preferences for engagement in decision-making were assessed using the Control Preference Scale (CPS), reflecting the degree to which patients want to be involved in their decision-making: active (patient prefers to make final decision), collaborative (patient wants to share decision-making with clinician), or passive role (patient wants clinician to make final decision). Most older adults with advanced CKD preferred a collaborative or active role in decision-making. Appropriately matched information flow with patient preferences was critical for satisfaction with SDM. The CPS may be an effective way for clinicians to assess patients’ preferred level of engagement and tailor information delivery.
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Join Us or Recruit a Colleague
Recruit a colleague to join the Coalition's over 700 members in transforming the culture of kidney care around the globe. Sign-up for Coalition Updates here and share with anyone who might have an interest in our work.
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FOLLOW US ON LinkedIn
We're now on Twitter! Keep up with the latest in supportive care and the Coalition's work here, and don't forget to repost and share.
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Coalition for Supportive Care of Kidney Patients
Publication Number: CSCKP-113023
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