Eric Lindner - Hospice Voices: Lessons for Living at the End of Life

Hospice Voices

Hospice Voices

Lessons for Living at the End of Life

Eric Lindner

Rowman & Littlefield Publishers, Inc.

Lanham Boulder New York Toronto Plymouth, UK

Published by Rowman & Littlefield Publishers, Inc.

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Copyright 2013 by Rowman & Littlefield Publishers, Inc.

All rights reserved . No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without written permission from the publisher, except by a reviewer who may quote passages in a review.

British Library Cataloguing in Publication Information Available

Library of Congress Cataloging-in-Publication Data

Lindner, Eric, 1958 author.

Hospice voices : lessons for living at the end of life / Eric Lindner.

p. ; cm.

ISBN 978-1-4422-2059-1 (cloth : alk. paper)ISBN 978-1-4422-2060-7 (electronic)

I. Title.

[DNLM: 1. Hospice CarePersonal Narratives. 2. Terminally IllPersonal Narratives. 3. Attitude to DeathPersonal Narratives. 4. Sick RolePersonal Narratives. WB 310]

RT87.T45

362.17'560922dc23 2013015719

The paper used in this publication meets the minimum requirements of American National Standard for Information SciencesPermanence of Paper for Printed Library Materials, ANSI/NISO Z39.48-1992.

Printed in the United States of America

to Ellen

for everything

All book profits will be donated to organizations committed to improving the lives of hospice patients and their families, such as the George Washington Institute for Spirituality & Health (Washington, D.C.), Hospice of Central New York (Liverpool), Hospice Support of Fauquier County (Virginia), Johns Hopkins Medicine (Baltimore), Kauai Hospice, St. Joseph Mercy Hospice (Ann Arbor, Michigan), St. Marys Hospice (Leonardtown, Maryland), and other entities, including those listed at www.hospicevoices.com.

Preface

I wasnt sure what to expect from Bob Zimmerman. But I sure didnt expect this from my first hospice patient: some of the most fun Ive ever had, and best advice Ive ever received.

The Ohioan joins a Native American from central California, a Neapolitan from Texas (by way of Brooklyns Little Italy), and four Virginia natives. Im assigned many more than seven patients, but it just so happens that what Bob, Little One, Dolly, Gordon, Ellen, Howard, and Cricket have to say helps me navigate some choppiness in my own life. It also just so happens that theyre the most fascinating people Ive ever met.

As regards the definition of fascinating , I consider myself a fairly strict constructionist. Ive fought bulls beside a drunken matador in Avila, interviewed homicidal gang members at the behest of my Nobel laureate professor in Chicago, negotiated with even scarier-looking oligarchs in Moscow, wolfed naan with a no-carb Hollywood actress in Mumbai, and schmoozed with U.S. presidents in my hometown of Washington. Fascinating though many of my pre-hospice experiences were, I wouldnt trade a single one for a single hour as a companion caregiver.

During my volunteer orientation, Im told that the average hospice patient survives three months. Once out in the field, however, I learn that theres no such thing as an average hospice patient. Every patient is unique. Some of mine thrive for yearsfighting every step of the way. Others slip away in hourslaughing as they depart.

In contemporary society, famous voices are ubiquitous, and so often boring, whereas the voices of the common folk are inspiring but muzzled. This book lets them speak for a change.

Given their blindness, bedpans, breathing tubes, and chemotherapy, of course my patients comprehend their fearsome, depressing mortality. But they dont want my pity. Just my ear.

It has at times been a challenge translating their voices into printed words. For starters, I didnt volunteer with any intention of writing anything, so it wasnt until well into my hospice work that I gave any thought to gathering and preserving source material. But by then many of my patients had died. Once the notion of a book had taken root, I was determined, first, not to let it interfere with my privilege to serve, and, second, to chronicle as a friend, not in the manner of a clinician or journalist. So, for instance, fearing its use might be intrusive, chilling, or otherwise counterproductive to my cardinal mission of simply being present with and for my patients and their loved ones, I decided against the use of a digital recorder (openly, let alone covertly).

Despite such constraints, the following stories are factual. My job as research assistant to a prolific, meticulous legal scholar taught me a thing or two about being methodical and attentive to detail. As I had to submit a report on each patient visit, this books methodology is anchored upon hundreds of such submissions. However, as the short, clinical nature of the reports omitted many memorable quotes and subtle details, I also consulted my original notes, typically scribbled down as soon as Id hopped into my car, while the recollections were still fresh in my mind. Patients, their family members, hospice colleagues, and others with knowledge or expertise kindly provided an additional check on veracity and context: reviewing draft manuscripts, and offering a host of valuable corrections and suggestions. (But all errors and omissions are mine alone.) Finally, unlike most hospice accountswhich fictionalize identitiesthe vast majority of my characters are real people, related to whom Ive received written consent to name names. Consequently, youll come to know real patients, their real families, their real living situations and coping strategies, and my very real (albeit well-intentioned) bungling as a novice caregiver.

I hope youll forgive my mistakes, remember their namesand never forget their voices.

Shared joy is a double joy;

shared sorrow is half a sorrow.

Swedish proverb

An Aptly Named Caregiver

J oy LeBaron seems really nice but distracted. Id love to have another volunteer... Ericdid you say your name was? The executive director of Hospice Support of Fauquier County (Virginia), Inc., is a slight woman. She looks about five to ten years younger than me, so in her early to mid-forties. She also looks unpretentious: her ensemble of slacks, blouse, and cable-knit sweater is loose fitting; her short hair, simply cut, is a wavy, bang-heavy lattice of several shades of blonde. Though she clearly appreciates my walking in off the street in February 2009, its not being on her to-do list is mildly disruptive; if, that is, its possible to disrupt the disruption that governs Joys feng shui. Her small office is crammed with collapsed walkers and wheelchairs, stands of green oxygen tanks, a cluttered conference table, an overflowing bookcase. It smells musty. The coffee at the base of the pot looks carbonized. The phone rings a lot, kicking over to voicemail. Ive currently got twenty patients. I could add another twenty by the end of the dayif I had more volunteers. I cant give my patients anywhere near the hours they want.

According to the National Hospice and Palliative Care Organization (NHPCO), her overburdened not-for-profit is one of 5,300 in the United Statesquite a rate of growth, considering Americas first hospice didnt open until 1974, in New Haven, Connecticut (in association with Yale University). Circa 2013, more than half the worlds hospices are located in the United States.

Joys an expert in palliative care, of which hospice is the best-known paradigm. Such care is all about comforting, not curing. Of those who die every year in the United States, nearly one in two are served by hospice. Moreover, as patientsand their loved onesgenerally rate their experiences very favorably, and the per diem hospice cost is but a tiny fraction of the per diem hospital cost, hospice is a very bright component in the oft-maligned U.S. healthcare system. One reason hospice is so efficient has to do with the role played by volunteers, nearly 500,000 of whom serve 1,650,000 terminally ill patients, annually. At many hospices, the volunteers outnumber the paid professionals.