Fading away

BETTY DAVIES has worked as a nurse, specializing in the area of death, dying, and bereavement for over twenty years. Her doctoral dissertation from the School of Nursing, University of Washington in 1983 and a postdoctoral fellow at the University of California—San Francisco in 1986 formed the basis for her seminal work pertaining to bereavement in siblings following the death of a child. She is a Founding member of the Board of HUGS Children’s Hospice Society, whose major work is the establishment of Canuck Place, the first free-standing hospice for children in North America. In addition, she has conducted several studies in palliative care focusing on the families of both adult and child patients. The goal of her research is to translate research findings into practical terms as a means of achieving her goal of optimizing the care provided to those who are terminally ill and bereaved. JOANNE CHEKRYN REIMER completed a Master’s in Nursing degree from the University of Washington. Her studies focused on working with families where a member had advanced cancer and wished to remain at home during their final days. She worked in palliative care in several different capacities: as an Assistant Professor at the University of British Columbia, as the Hospice Nursing Consultant and Hospice Program Coordinator for the Vancouver Health Department Hospice Program, and currently as the Bereavement Care Coordinator for Canuck Place, a hospice for children in Vancouver, British Columbia. She has numerous publications that focus on family issues and cancer. PAMELA BROWN graduated with a Bachelor of Science in Nursing from the University of Manitoba in 1980. Subsequent work experiences focused on care of the chronically and terminally ill with organizations such as the Victorian Order of Nurses Home Palliative Care Program. She completed a Master of Science in Nursing with a clinical specialization in palliative care at the University of British Columbia in 1986. She commenced work as a Clinical Nurse Specialist in Palliative Care at the Vancouver Health Sciences Center, and it was at this time that she began her involvement with the “Families in Supportive Care Project”. In 1988, she moved to Calgary to assume her current position of Assistant Director of Calgary Health Services—Home Care Division. NOLA MARTENS completed her Masters of Science in Nursing in 1988 from the University of Alberta. She has worked with families and patients with cancer for many years as a staff nurse and as an enterostomal therapist. She has also been involved with oncology nursing education and new staff training in a regional cancer institute. More recently, she was the Research Associate for the “Families in Supportive Care Project.” At the present time, she is a research assistant for a study related to adolescent risk taking behavior.

Preface

Acknowledgment

Introduction

CHAPTER 1 Fading Away

CHAPTER 2 Redefining

CHAPTER 3 Burdening

CHAPTER 4 Struggling with Paradox

CHAPTER 5 Contending with Change

CHAPTER 6 Searching for Meaning

CHAPTER 7 Living Day-to-Day

CHAPTER 8 Preparing for Death

CHAPTER 9 When the Children are Teenagers

CHAPTER 10 Family Functioning

CHAPTER 11 Location of Care

CHAPTER 12 Challenges of Conducting Research in Palliative Care

Appendix I Research Design

Appendix II Interview Guidelines

Appendix III Case Studies