Linköping University Medical Dissertations No. 1611

Communication about the Heart Failure Trajectory in Patients, their

Families and Health Care Professionals

Lisa Hjelmfors

Division of Nursing Science

Department of Social and Welfare Studies

Linköping University, Sweden

Linköping 2018

Lisa Hjelmfors, 2018

Cover picture: JoAnna S Fransson

Article I has been reprinted with the permission of the copyright holder.

Article II has been reprinted with the permission of JOURNAL OF PALLI- ATIVE MEDICINE, Volume 18. Issue 10, by Hjelmfors et al., published by Mary Ann Liebert, Inc., New Rochelle, NY.

Article IV is reprinted in the format of the final peer-reviewed version with permission of the copyright holder.

Printed in Sweden by LiU-Tryck, Linköping, Sweden, 2018

ISBN 978-91-7685-356-6

ISSN 0345-0082

To Simon

”Communication is an important component in health care. Perhaps the

most important. If St Paul had been a physician and missionary in Swe-

den today, he would have preached: -If I can diagnose Lyme disease and

IBS but lack communication skills, I am no more than an echo or a rat-

tling cymbal. If I have surgical talent and have cut my way into all the

nooks and crannies of the body but lack communication skills, I am noth-

ing. If I have 185 published articles and know every function of SPSS but

lack communication skills, I have gained nothing. But science, evidence

and communication are now prevailing. And of these, communication is

the greatest.”

Henrik Widegren, phoniatrician at Skåne University Hospital

Contents

CONTENTS

ABSTRACT ............................................................................................................................................... I

LIST OF PAPERS ..................................................................................................................................... III

ABBREVIATIONS .................................................................................................................................... 1

INTRODUCTION ..................................................................................................................................... 3

BACKGROUND ....................................................................................................................................... 5

COMMUNICATION IN HEALTH CARE .................................................................................................................. 5 COMMUNICATION IN PALLIATIVE CARE .............................................................................................................. 5

Palliative Care .................................................................................................................................... 6 Specific issues for communication in palliative care .......................................................................... 6

HEART FAILURE CARE..................................................................................................................................... 7 Heart failure ....................................................................................................................................... 7 Heart failure management ................................................................................................................. 8 Specific issues in communication in heart failure care ....................................................................... 9

PALLIATIVE CARE IN HEART FAILURE .................................................................................................................. 9 Palliative care communication in heart failure care ........................................................................ 11 Awareness of dying .......................................................................................................................... 11 Prognostic awareness ...................................................................................................................... 13 End-of-life care ................................................................................................................................. 14 Planning discussions about prognosis and end-of-life ..................................................................... 14

Stage 1- Chronic stable phase ..................................................................................................................... 16 Stage 2- Crisis phase ................................................................................................................................... 16 Stage 3- Terminal care phase ...................................................................................................................... 17

INTERVENTIONS TARGETING PALLIATIVE CARE COMMUNICATION .......................................................................... 17 RATIONALE ............................................................................................................................................... 18

AIMS .................................................................................................................................................... 21

METHODS ............................................................................................................................................ 23

DESIGN .................................................................................................................................................... 23 Sampling........................................................................................................................................... 24

DATA COLLECTION ...................................................................................................................................... 25 Questionnaire on perceptions about discussing prognosis and end-of-life care .............................. 25 Registration form on prevalence and practice of discussing prognosis and end-of-life care ........... 26 Focus groups, and individual interviews .......................................................................................... 26 Ethnographic observations............................................................................................................... 27 Co-design, ideas groups and prototyping ........................................................................................ 27 Feasibility testing ............................................................................................................................. 28

DATA ANALYSIS .......................................................................................................................................... 28 Quantitative data ............................................................................................................................. 28 Qualitative data ............................................................................................................................... 29

ETHICAL CONSIDERATIONS ............................................................................................................................ 30

RESULTS ............................................................................................................................................... 33

STUDY PARTICIPANTS .................................................................................................................................. 33 HF NURSES’ PERSPECTIVE ON COMMUNICATION ABOUT PROGNOSIS AND END-OF-LIFE CARE ..................................... 35 PRACTICE OF DISCUSSING PROGNOSIS AND END-OF-LIFE CARE IN A PATIENT EDUCATION CONTEXT ............................... 36 PATIENTS’ PERCEPTIONS OF PROGNOSIS COMMUNICATION ................................................................................. 37

Overarching theme 1: The message sent ......................................................................................... 38 Overarching theme 2: Hoping for the best or preparing for the worst ............................................ 38

Contents

SIMULATION TRAINING IN END-OF-LIFE CARE COMMUNICATION ........................................................................... 39 INTERVENTION TO IMPROVE COMMUNICATION ................................................................................................. 41

The Question Prompt List for patients and their family members.............................................................. 41 The communication course for health care professionals .......................................................................... 42

Result of the testing of the intervention .......................................................................................... 43 Response to the invitation .......................................................................................................................... 43

Feasibility testing ............................................................................................................................. 43

DISCUSSION ......................................................................................................................................... 49