The Family Handbook of Hospice Care

[Pages:130]The Family Handbook of Hospice Care

Fairview Hospice Fairview Health Services

Fairview Press Minneapolis

THE FAMILY HANDBOOK OF HOSPICE CARE ? 1999 Fairview Hospice, Fairview Health Services. All rights reserved. Except as noted on certain forms throughout this book, no part of this publication may be used or reproduced in any manner whatsoever without written permission, except in the case of brief quotations embodied in critical articles and reviews. Forms may be reproduced for personal use only. For further information, please contact the publisher.

Published by Fairview Press, 2450 Riverside Avenue, Minneapolis, MN 55454.

Fairview Press is a division of Fairview Health Services, a community-focused health system, affiliated with the University of Minnesota, providing a complete range of services, from the prevention of illness and injury to care for the most complex medical conditions. For a free current catalog of Fairview Press titles, call toll-free 1-800-5448207, or visit our Web site at .

First Printing: October 1999; Revised January 2008 Printed in the United States of America

Writer: K?ren Hess, Innovative Programming Systems Inc.

Medical Disclaimer: This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that the publisher is not engaged in the provision or practice of medical, nursing, or professional healthcare advice or services in any jurisdiction. If medical advice or other ?professional assistance is required, the services of a qualified and competent professional should be sought. Fairview Press is not responsible or liable, directly or indirectly, for any form of damages whatsoever resulting from the use (or misuse) of information contained in or implied by these documents.

Did you know that Fairview Hospice, a non-profit organization, relies on donations to support the care we provide? Many of our services not covered by Medicare or private insurance. Your generous donations allow us to offer music and massage therapy, medication delivery, grief support, and more. To donate to Fairview Hospice, call us at 612-721-2491 or toll-free at 1-800-285-5647. Or write to us at Fairview Hospice, 2450 26th Avenue South, Minneapolis, MN 55406. Or go to fairview. org/foundation to donate online. Thank you for your generosity.

SMARTworks 520037 ? REV 03/12

Other things may change us, but we start and end with family. --Anthony Brandt

With deep gratitude, we dedicate this book to the patients and families whom we have been privileged to know and serve over the years. You have inspired us. May the blessings you have given others through your love and service come back to you.

Acknowledgments

Families and caregivers have often asked Fairview Hospice for written information to help them care for their terminally ill loved ones at home. The Family Handbook of Hospice Care has been a dream of Fairview Hospice staff for many years. This dream became a reality when Fairview Press recognized the value of the project and offered to assist us. We wish to thank the following people whose contributions were particularly helpful in the preparation of this book.

Our hospice patients and families inspire us daily to learn new and better ways of supporting them as they journey together into an uncertain future. We would especially like to thank Katherine Baumgartner, whose beloved father, Olaf Kaasa, was a patient of Fairview Hospice. Her perspective as a family caregiver was extremely valuable in creating this book.

Our Fairview Hospice staff, who conceived the very idea for this book, gave unselfishly of their time to convey the essence of our message to the writer. We would especially like to thank the core committee members for their many hours discussing and editing the text under tight deadlines. These individuals include Kathleen Lucas, Virginia Bender, Tami Schoenbauer, Steve Sims, Jean Campbell, and Mary Hagen.

Our writer, K?ren Hess, listened intently, revised repeatedly without ego, and captured the essence of the message beautifully. Her openness, willingness to learn, and easygoing style made this book possible.

The Family Handbook of Hospice Care would continue to be a loose collection of miscellaneous booklets and photocopied handouts if Marne Oberg and Lyndsay Hall of Fairview Public Relations had not recognized its potential and called Fairview Press to explore the feasibility of writing a book.

The generous contributions of two other individuals have helped turn this book into an excellent resource for patients and families. Larry Beresford, a former senior writer for the National Hospice and Palliative Care Organization, took time out from his very busy schedule to write a thought-provoking foreward, and Kristin Dungan of Fairview's legal department was kind enough to act as a consultant for the legal sections.

To the staff at Fairview Press, a very special thank you for providing the talent and expertise necessary to deliver a wonderful resource for hospice families and staff everywhere. Lane Stiles understood our dream and saw the possibilities. Stephanie Billecke, our editor, also deserves enormous gratitude. She was our shepherd and coach, possessed of a great sense of commitment, dedication, humor, and patience. Without Stephanie, we would still be dreaming.

Contents

Foreword ix

You're Not Alone: How Hospice Can Help 1:1

What is Hospice? 1:2 The Cornerstone of Hospice 1:3 Who Might Benefit from Hospice? 1:5 Making the Decision 1: 5 The Role of the Patient 1:6 The Role of the Family 1:6 The Role of Hospice 1: 7 The Care Plan 1:8

Tears and Smiles: Coping with a Terminal Illness 2:1

The Stages of Dying--In Theory 2:2 The Reality of Dying 2:5 Relationships 2:9 Spiritual Issues 2:10

Being a Caregiver: One Day at a Time 3:1

Facing Change 3:2 Tending to Physical Needs 3:4 Making Decisions 3:4 The Emotional Roller Coaster 3:5 Spiritual Support 3:6 Communication 3:6

Maintaining Quality of Life 3:7 Tending to Children's Needs 3:7 Maintaining Balance 3:8 Caregiving as a Partnership 3:9

Daily Caregiving: Each Day a Gift 4:1

Setting Up the Home 4:2 Equipment and Supplies 4:4 Getting Organized 4:5 Coming Home 4:6 Daily Physical Care 4:6 Caring for Symptoms 4:9 Activities to Fill the Day with Joy 4:13 Exercise 4:14 Maintaining Sexuality 4:15 Reducing Stress 4:15

Pain: Control Is the Goal 5:1

Understanding Pain 5:2 Pain Assessment 5:4 The Pain Management Plan 5:4

Complementary Therapies: Creating Wholeness and Meaning 6:1

Holistic Care 6:2 Music Therapy 6:3

Massage Therapy 6:5 Holistic Care at the End of Life 6:7

Nutrition: Nourishment Is More Than Food and Drink 7:1

Loss of Appetite 7:2 Making Mealtimes Enjoyable 7:3 Fluid Needs 7:4 Common Causes of Eating Problems 7:4 Artificial Hydration and Nutrition 7:8 When Eating and Drinking Stop 7:9

Financial and Legal Preparations: Getting One's House in Order 8:1

Paying for Hospice Care 8:2 Lifetime Planning 8:5 Financial Arrangements 8:5 Healthcare Decisions 8:7 Planning the Funeral or Memorial 8:9 Other Final Preparations 8:11 Document Checklist 8:12

When Death Is Very Near 9:9 The Moment of Death 9:9 Immediately after Death 9:10 The End of a Journey 9:10

After the Loss: Moving On 10:1

Grief 10:2 Hospice Bereavement Support 10:5 Getting Past the Pain 10:6 Bereaved Children 10:7 Practical Matters 10:8 Moving On 10:12

Resources: Where to Find Information and Help 11:1

Books and Pamphlets 11:1 Organizations and Agencies 11:5

When Death Is Near: Your Final Days Together 9:1

Care Options 9:2 Involving Children 9:3 When Your Loved One Wants to Hasten Death 9:4 Remaining Close until the End 9:4 Signs That Death Is Approaching 9:6

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