Learning Lab 19 This presenter has nothing to disclose Paving the Path to Patients Content Expertise Chris Sarfaty MSW Dori Schatell MS Britt-Mari Banck RN Nancy Spaeth RN Richard Gibney MD Sunday, Dec. 7, 2014 1pm 4:30 Session Objectives P2 This session will share learnings, applicable to all medical settings, from the renal dialysis world in the US and Sweden, regarding: How to access patients content expertise. How to respectfully invite patients to be our teachers. Methods to pave paths to patient engagement and collaborative care. Shared decision making and care planning tools. Lessons from patient empowerment/patient disruptive innovator stories. Federally legislated Patient-Centered Renal Care. 1
A GOOD LIFE WITH KIDNEY DISEASE Nancy Hewitt Spaeth BA, RN nancyhewitt16@gmail.com About Nancy Bachelor of Education 1970 while dialyzing over night at home on my Kiil then going to work. Nursing Degree 1983 while dialyzing at home as a single mom, getting 2 nd transplant then going to work. Foundation Board NW Kidney Centers Quality Committee NW Kidney Centers Patient Council for PCORI Depression study with Kidney Research Institute in Seattle. CKD since 1959 2
Childhood Rehabilitation It s not just for Heart people, it s for Kidney people, too! If the treatment of chronic uremia cannot fully rehabilitate the patient, the treatment is inadequate. It s for renal patients, too! Belding Scribner (1921-2003) 3
Life Line It s important to talk with your patient about their health plan, what would improve their quality of life? Teach them how to teach you, so you can give the best care. MDs actions & prescriptions are based on patient needs, making them the focus & leader of the team. The doctor has an agenda but so does the patient! 1963 4
Off to College 1965 A Little Bit of History 1966 Chosen by the Life and Death committee for Dialysis, done overnight at Ecklind Hall, Seattle 1968 Kiil Dialyzer and Drake Willock machine at home, overnight. There s a huge difference between 4 hours and 8-10 hours of dialysis 3 times a week 5
Life Line College Years 1965-1970 COPING After the disbelief, fear, anger and denial Find your way to acceptance Kidney disease is a part of you, now. You can be a healthy person with kidney failure We re going to build a tool kit! 6
Life Line 1970 graduated from Seattle University Got a job! Dialysis and Transplant 1967 1972 7
Life Line A Transplant and a Family 1972 - Transplant and Marriage 1974 - First Child, Josh 1976 - Second Child, Sarah I substituted, all grades, all subjects. Life Line Feb 1979 Mommy s sick And we re waiting for her to come home 8
Life Line 1979 A Challenging Year! Separation/Divorce Lost kidney transplant Began Nursing School Started back on Hemo 4 hours runs, 3 days a week. I started back in the Center and begged Dr. Tenckhoff to let me take my dialysis home, for the health & freedom of it. Life Line - Hct is 15 9
Life Line 1979 Losing a transplant It s like starting all over again, but you bring out your tool box containing: Coping Exercise and nutrition Reframing - I am so lucky to have dialysis Setting goals with my Nephrologist Back on Dialysis - Setting Goals Staying strong 10
Life Line Good Eating Protein Potassium Phosphates Sodium I keep mine under 1 gram/day Appt with dietitian Take it to heart! Life Line Second transplant, July 1981 Went back to school in the Fall 11
Life Line Graduation! And back to work Life Lines I went to work on the Urology, Nephrology Floor of Virginia Mason Hospital, in Seattle, nights! The next year, I worked days in an Internal Medicine office with 3 doctors. 5 years later, I lost this kidney. 12
Life Line The Eighties Here we go, AGAIN! 1986 Went back to the center then home hemo. Bring out that Coping Tool Box. Hct = 15, too hard to work Life Line Staying Strong keeps me afloat 13
Life Line My House I built my own house, with the help of subcontractors, of course ;-) But I did nail down some sub-flooring and added some shingles Finished in 1987 Life Line The Deck of My House 14
Life Line Erythropoietin trials Life Lines - 1989 After 2 ½ years, my THIRD kidney arrives. Another life line 15
Life Line The Nineties I went back to work part time, substitute teaching and per diem nursing We began to have exchange students, again. Life Line - 1990 16
Life Line 1992 & 1994, Children graduated from high school Life Line 1993 Went to work as a nurse in a Physical Medicine and Rehabilitation Clinic. 17
Life Line 1995 Lost 3 rd transplant Here we go again! Began CAPD Continued to work Life Line I turned 50! 18
Life Line 1997 Joined Life Options Rehab Advisory Council and traveled to national meetings with my CAPD. Life Line The 2000s 2000 Fourth Transplant and I kept working. 19
Life Line - The 2000s Children Married Life Lines 2000s I am able to work on neighborhood projects. I travel, more! I do my own gardening! 20
Life Line - 2001 Hiking in the Wasach Mountains of Utah The Bidding of your Patient For years we ve squandered the opportunity to make a real difference in the lives of our dialysis patients by doing the bidding of payors or policy makers in prescribing minimally accepted doses of dialysis rather than doing the bidding of our patients *Singh, Ajay, Wait, Wait Don t Tell Me Is More Dialysis Better? www.kidneydoctor.org Sept 29, 2011 21
Life Lines Skiing with Josh Now he s teaching Eli New York City Lasker Awards 2002 Dr. Scribner and Dr. Kolf 22
New York City with Sarah. Life Lines- Lancashire, England Hewitt Farm 2005 23
Scotland-2008 Hume Clan Gathering My Grandchildren My Exponential Miracles 24
Legacies of Hope Nancy H. Spaeth Living Room Family Christmas 2012 25
India Tanker Foundation 2013 For the Sake of Honour Award Life Line There is nothing like a pet to get you up in the morning! 26
Clinical Quality Pyramid Your Patient s Expertise for Quality of Life Davita Alan Nissenson Life is a Journey There s no such word as can t! The sun s around the corner. 27