Coalition for Supportive Care of Kidney Patients.

Transcription

1 Coalition for Supportive Care of Kidney Patients

2 About the Coalition The Coalition for Supportive Care of Kidney Patients (CSCKP) brings together like minded people who care deeply about the quality of compassionate, supportive care for kidney patients. We are professionals from many disciplines and laypersons who are working for true patient centered care that values quality of life. Mission Promote effective interchange among patients, families, healthcare professionals, and payers to ensure the provision of patient centered supportive care for patients with kidney disease. Vision Offer palliative care to everyone with chronic and end stage kidney disease, from the time of diagnosis through the end of life and bereavement. Informed, supported patients and families receive the care they want. 2

3 Priority Areas Goal Create culture change that transforms the treatment of persons with kidney disease, putting every patient at the center and integrating palliative principles and practices throughout the care continuum. Priority Areas Education: Pursue development and deployment of educational offerings for healthcare professional team members and patients/families Quality, Advocacy, and Policy: Improve quality of care under the umbrella of the 3 Aims and the National Quality Strategy Research: Foster conditions for conducting research that meets supportive kidney care research agenda 3

4 Membership Almost 500 US and international members Countries Represented United States Canada Australia Taiwan India Saudi Arabia United Kingdom Germany Colombia Stakeholders Represented Kidney and palliative care professional societies Organizations of kidney patients and advocates ESRD Networks Dialysis provider organizations Hospitals and universities National Institutes of Health National hospice and palliative care organizations 4

5 Education Resources Medicare Hospice Benefit & ESRD Patients flowchart for professionals Planning Today for Tomorrow s Healthcare: A Guide for Dialysis Patients, Families, and Caregivers brochure for patients (revised 2016) Planning Today for Tomorrow s Healthcare: A Guide for People with Chronic Kidney Disease brochure for patients American Nephrology Nurses Association (ANNA) Palliative Care Module for nurses caring for dialysis patients 5

6 Education Resources Treating Pain in Late CKD & Dialysis Patients: Clinical Algorithm & Preferred Medications brochure for professionals (revised 11/2016) Newly revised! 6

7 Education and Research Publications in the Field Culp S, Lupu D, Arnella C, Armistead N, Moss AH. Unmet supportive care needs in U.S. dialysis centers and lack of knowledge of available resources to address them. J Pain Symptom Manage. 2016;51(4): St. Clair Russell J, Lupu D, Seliger S, Moss A. Providing supportive care to patients with kidney disease. Nephrol News Issues. 2016; 30(5): Armistead N, Bova Collis R. Advance care planning: the patient perspective. Nephrol News Issues. 2016; 30(11): O'Hare AM, Szarka J, McFarland LV, Taylor JS, Sudore RL, Trivedi R, Reinke LF, Vig EK. Provider perspectives on advance care planning for patients with kidney disease: Whose job is it anyway? Clin J Am Soc Nephrol. 2016; 11:

8 Education and Research Publications in the Field Multiple authors. Moving Points in Nephrology: Kidney Supportive Care. Clin J Am Soc Nephrol. 2016:11(10). Wong SPY, Hebert PL, Laundry RJ, Hammond KW, Liu C, Burrows NR, O'Hare AM. Decisions about renal replacement therapy in patients with advanced kidney disease in the US Department of Veterans Affairs, Clin J Am Soc Nephrol. 11(10): Scherer JS and Moss AH. Practice change is needed for dialysis decision making with older adults with advanced kidney disease. Clin J Am Soc Nephrol. 11(10): Wachterman MW, Pilver C, Smith D, Ersek M, Lipsitz SR, Keating NL. Quality of end of life care provided to patients with different serious illnesses. JAMA Intern Med. 2016;176(8):

9 Education and Research Pending Publications in the Field NIH Funding for Palliative Care Kidney Research article by Dale Lupu and Jacob Bernhardt for Journal of Palliative Medicine O Hare A, Song M K, Kurella Tamura M, Moss A. Research priorities for supportive care for older adults with advanced chronic kidney disease. J Palliative Medicine. Arnella C, Von Roenn, J, Lupu, D. Lessons learned from oncology: A template for incorporation of palliative care into core clinical concepts of other medical specialties. 9

10 Education In 2017 Coalition leadership/membership to present Supportive Care in Nephrology: Teaching the Clinician, Treating the Patient pre conference course at NKF Spring Clinical Meetings (April 2017) 10

11 Quality, Advocacy, & Policy Coalition Steering Committee members Nancy Armistead, MPA, and Louis Diamond, MB, ChB attended the NHPCO s Congressional screening of the PBS/Frontline documentary, Being Mortal, based on Dr. Atul Gawande's best selling book of the same name. Ms. Armistead and Dr. Diamond met with Senator Mark Warner's (D VA) office to express the Coalition's support for The Care Planning Act, Senator Warner's and Senator Johnny Isakson's (R GA) bipartisan legislation designed to provide people with serious illness the freedom to make more informed decisions about their care and the power to have those decisions honored. Dale Lupu attended the National Academy of Medicine s private workgroup meeting on Assessing Progress in End of Life and Serious Illness Care 11

12 Research Grants Funding from the Patrick and Catherine Weldon Donaghue Medical Research Foundation awarded to George Washington University with the Coalition serving as a sub awardee. The MY WAY (Make Your Wishes About You) Project will test advance care planning with patients with advanced kidney disease. Three clinical sites are also serving as sub awardees: Jane Schell, MD University of Pittsburgh Medical Center Kidney Clinic Jennifer S. Scherer, MD New York University Nephrology Faculty Group Practice Michael Germain, MD Baystate Medical Center 12

13 Research Grants Funding from the Gordon and Betty Moore Foundation awarded to the Coalition 15 month grant to support the development of the Pathways Project Focus on evidence based best practices for delivering person centered palliative care to patients with CKD The project will develop tools to establish pathways to conservative non dialytic management, palliative care throughout the continuum of kidney disease, and dialysis withdrawal for those patients who choose to stop dialysis. 13

14 Research The Coalition reached out to Sean Morrison, MD, Director of the National Palliative Care Research Center (NPCRC), asking for CKD to be among those chronic diseases for which the NPCRC would develop research priorities. Consequently, Alvin Moss, MD, Ann O Hare, Mi Kyung Song, PhD, RN, and Manjula Kurella Tamura, MD, were invited to participate in a NPCRC NIH Research Priorities for Geriatric Palliative Care in Surgery and Select Medical Sub Specialties workshop to develop research priorities for supportive care for patients with chronic disease, including CKD. Manuscript on CKD palliative care research priorities is in press in the Journal of Palliative Medicine. 14

15 Research Sojourns Scholar Leadership Program Grant Awardees Coalition member Jennifer Scherer, MD, NYU School of Medicine, was awarded a Sojourns Scholar grant to develop her renal palliative care program, Kidney CARES (Comprehensive Advanced Renal and End Stage Renal Disease Support). Coalition member Daniel Lam, MD, the University of Washington School of Medicine, was awarded a Sojourns Scholar grant to systematically integrate palliative care and advance care planning into the routine care delivery of ESRD patients across an entire dialysis provider system awardee 2015 awardee 15

16 ASN Supportive Care Community Forum Most commented ASN online Community Ambassadors Mike Germain, MD Jane Schell, MD Jennifer Scherer, MD 16

17 Supportive Care Community Initiatives How Are YOU Advancing Supportive Care? Topic Contact Renal supportive care in Taiwan Chia Ter Chao, MD National Taiwan University Hospital Communication skills training programs for renal fellows, nurses Assessing distress level in patients to inform clinic visits Conducting ACP conversations with patients/families Advance Care Planning: Let's All Talk Care partner and patient perspectives on ACP Katharine Cheung, MD University of Vermont Denise Eilers, BSN, RN Davenport, IA or

18 Supportive Care Community Initiatives How Are YOU Advancing Supportive Care? Topic Timing of Hospice Enrollment and End of Life Utilization and Spending among Patients with ESRD *Oral Abstract Session at ASN* Session Title: Patient Centered Outcomes with Maintenance Dialysis When: Friday, 11/18/2016, 4:30 PM 6:30 PM (Presentation Time: 6:18 PM 6:30 PM) Location: W185 Contact Melissa Wachterman, MD, MPH, MSc Boston VA Healthcare System & Brigham and Women's Hospital

19 For additional information, including resources for patients and families, visit: or 19