Facing Death, Embracing Life: Understanding What Dying People Want - Softcover

Kuhl, Dr. David

Softcover

ISBN 10: 0385660669 ISBN 13: 9780385660662

Publisher: Doubleday Canada, 2006

Synopsis

A practical and compassionate guide to living with a terminal illness, written by a well-respected palliative care doctor.

In his highly regarded bestseller What Dying People Want, Dr. David Kuhl provided valuable insights into the experience of living with a terminal illness. In this guide, Dr. Kuhl distills the practical advice he presented in his first book and helps readers to cope with a terminal illness by providing concrete, step-by-step suggestions, as well as offering space for private reflection. This format will allow readers — those contending with terminal illness as well as their family and friends — to sort through difficult but vital conversations with loved ones and caregivers before they take place. This guide includes advice on:

• Talking to health care providers about treatment and diagnosis
• Learning the right questions to ask specialists
• Finding out about alternative treatments
• Considering home care vs. hospitalization
• Finding sources of financial support
• Offering space and guidance for recording and reflecting on larger, more emotional themes

About this title

About the Author

Dr. David Kuhl began his career in palliative care seventeen years ago, providing medical care for people with cancer in his practice. He was invited to develop a palliative care program for St. Paul’s Hospital in Vancouver. His team at St. Paul’s has attended thousands of people at the end of life. He is the author of What Dying People Want, published by Doubleday in 2002. He is a frequent speaker on palliative care all over North America. He lives in Vancouver, B.C., with his family.

Excerpt. © Reprinted by permission. All rights reserved.

Introduction

I ended my first book, What Dying People Want, with a description of my perspective on the final days of my sister’s life. As I write these words, several years have passed since Nancy died. Surrounded by family members, I trust that she knew how much we loved her, because we all had a chance to tell her. I remember my time with her as if it happened ­yesterday.

Through the last weeks of Nancy’s life I was challenged to face mortality in my own family – was the work I had been doing merely a research project or were the lessons I had learned pertinent to the situation? I knew at that moment that the people I had known in my work over the previous fifteen years and those who had participated in the research project had given me an incredible gift in offering their stories to me. Those stories provided guidance through some very difficult days. The gift of their stories made a significant difference to Nancy’s journey, as well as to the journey of my whole family. We were able to do and say what needed to be done and said. For that, I will be forever grateful. Another gift that was given to me through the work I did with people at the end of life was the realization that what dying people want is the same as what living people want, primarily a sense of connection to themselves, to those they love and who love them, and to a sense or essence of something greater than themselves. Physical pain, poor communication and anxiety are some of the features that impede the process of connection. For many people, knowing that they have a terminal illness serves as a catalyst for them to search for meaning, to make sense of their lives, to appreciate and be honest with themselves and with those they ­love.

I wrote the last chapters of the book shortly after Nancy’s death. During that time, I experienced a lot of emotions, one of which was anger. “I was angry and frustrated with a system that seemed to allow her to slip through the cracks. In fact, at one point I was filled with rage. I understand the system, and I understand that things happen unintentionally. These same things have happened to people under my care over the years. But I understand it differently now. The system will never be perfect, but because it was my sister, I wanted perfection for her.” People at the end of life can benefit from the company of others who share that time with them, people who work hard to know and understand the needs and desires of the person at the end of life in the context of a complex health-care system, people who are willing and prepared to act as advocates on behalf of the person with the terminal ­illness.

I was also angry at myself for waiting. “One would think that fifteen years of being with people who are dying, listening to the stories of their lives through a research project, and writing a book about it would be enough to teach me that waiting is a risky business,” I wrote then. I remember how Nancy and I decided to meet at a palliative care conference in Prince Albert, Saskatchewan, several years before Nancy died. She was a palliative care nurse, so she had good reason to be there. In part she attended so we could meet. It was a meeting of adult siblings. It was the first conversation we had in the absence of our spouses and children. We had our first interaction about who we were and who we had become as adults since we left home. After she died, I was very sad that the opportunity for more conversations like that never happened. We certainly had more conversations, but never again were they quite as intimate as that time in Prince Albert. I was angry and deeply disappointed that distance, time and apprehension had prevented us from cultivating our adult relationship. That was part of my ­grief.

I remember writing about my experience of feeling anger toward Nancy. (I still feel an awkwardness about saying that.) “I’m angry at her for her being so private, so independent, so alone in her suffering that she didn’t invite me to stop waiting and come to be with her. But I know that I need to respect her for being the private person she was. I know that anger is part of grief, but it feels that we ought not to be angry at those who have died. I’m angry because I love her and I miss her. I am working to forgive myself for waiting too long. I know she knew I loved her and I know that she loved me–that’s the beginning of forgiveness.” I certainly respect the choices she made, as they were her choices. I am no longer angry at her. My understanding and appreciation of who she was in my life has only grown over time. And, I still miss her. I believe I will continue to miss her for as long as I live. That emotion is testimony to who she was in my life and now serves as a reminder of the value of our ­relationship.

If I had to do it again, would I do anything differently? Absolutely. In one sense the course of Nancy’s illness was like a chronic disease. It went on for nine years, and I believed it could continue for considerably longer than it did. I waited too long to deepen my relationship with her. It’s my hope that this book will prevent you from doing the same thing I did, that is, waiting too long to have meaningful conversations and discussions with people who are important to you, especially if you or they have a terminal illness, a chronic illness, or may simply be getting on in years.

Edition details

• Publisher: Doubleday Canada
• Publication date: 2006
• Language: English
• ISBN 10: 0385660669
• ISBN 13: 9780385660662
• Binding: Paperback
• Number of pages: 336