HF

POLICY

Workshop

THE HEART FAILURE CONTINUUM AND THE LIVED EXPERIENCE: PERSPECTIVES FROM DIAGNOSIS THROUGH TRANSPLANT AND BEYOND

Co-Chair(s)

• Jillianne C.

  Jillianne Code, Ph.D

  President / Assistant Professor
  HeartLife Foundation
• 

  Heather Ross, MD, MHSc, FRCPC, FCCS, FACC

  Head, Division of Cardiology
  University of Toronto

Presenter(s)

• Cynthia C.

  Cynthia Culhane
• Marc B.

  Marc Bains, BBA

  Vice-President
• 

  Jackie Ratz, BA

  MB HeartLife Champion
• Sunny T.

  Sunny Tutt, BBA

  BC HeartLife Champion
• Heather L.

  Heather Lannon, MSW, DSocSci Candidate

  NL HeartLife Champion

As patients, living successfully with heart failure (HF) is not simply a function of the quality of care we receive, or of the data our clinicians use to make decisions, but it lies in our ability to understand, engage in, and act on the advice and treatments our clinicians provide (Code, Bains & Virani, 2019). Stories often told around the continuum of heart failure care usually begin with the devastation a diagnosis has – physically, emotionally, psycho-socially, economically – for patients and family carers. Although this devastation is true, in this first of it's kind workshop for CCC, developed and led by patients and family carers, aims to tell a different truth. Through interactive storytelling, demonstrations of reflexive action, and engagement with community, our panel of experts in the lived experience of heart failure will illustrate that through adversity along the continuum of heart failure care, from diagnosis, medical devices, emergency surgeries, mechanical circulatory support, advanced care planning, through transplantation, and beyond, the human spirit is the only current cure for heart failure. Proposed Outline: Opening Remarks, Setting the Stage 1. Dr. Heather Ross (3 mins) Setting the Stage 2. Dr. Jillianne Code (5 mins) Panel Members – Voice of the Lived Experience 3. Ms. Jackie Ratz (5 mins) 4. Dr. Sharon Bray (5 mins) 5. Mr. Marc Bains (5 mins) 6. Mr. Sunny Tutt (5 mins) 7. Ms. Heather Lannon (7 mins) The Heart Failure Continuum: A HeartLife Story 8. Dr. Jillianne Code (5 mins) Interactive Question & Answer Period Drs. Heather Ross & Jillianne Code, Moderators 9. Question & Answer (20 mins)

 

Target Audience(s):

Heart failure specialists
General: All cardiovascular (clinical and research) health professionals
Researchers

Learning Objectives

At the conclusion of this session, participants will be able to:

• identify the unique challenges patients and family carers face while living with a heart failure diagnosis, through listening to the stories of patient and family carer panelists currently living along the heart failure continuum;
• comprehend the social, psychological, and economic impacts of living with heart failure from the perspective of the lived experience, by participating in an interactive panel question and answer period; and
• empathize with the complexity of the lived experience of heart failure – from diagnosis through transplant – and recognize what they as practitioners, researchers, and clinicians can do to assist in the shared journey we all face.