from
Questioning Assumptions and Dawning Awareness: My Journey
in
Dying Well: The Prospect for Growth
at the End of Life

by Ira Byock, M.D.
Riverhead Books

In recent years I have consciously rejected the term good death because I have not found it helpful in describing the personal, human experience of decline and demise. Good death connotes a formulaic or prescriptive approach to life's end, as if a good outcome chiefly depended on the right mix of people, place, medications, and services. Furthermore, the phrase good death tends to blur the distinction between death-- the state of nonliving-- and the preceding time of living.

If you ask someone to describe what, for them, would be a good death, they will typically tell you what they want to avoid. "I don't want to die in pain." "I don't want to suffer." "I don't want to be a burden on my family." "I don't want to leave my family with debts or go through our savings." "I don't want to die alone." The image such statements convey of a good death resembles a photographic negative, devoid of tone and texture or real color.

In contrast, the phrase dying well seems better suited to describing the end-of-life experience that people desire. It expresses the sense of living and a sense of process. To my ears it also carries a connotation of courage. Furthermore, dying well expresses what I have witnessed most consistently: that in the very shadow of death one's living experience can yet give rise to accomplishment, within one's own and one's family's system of values.

Over the years I have met a number of people who were emotionally well while their physical body was withering and, for some, literally rotting. Logically, if even the most emotionally robust among us will eventually die, it follows that a certain wellness in dying must be possible. My experience in hospice confirms that this is true. Even as they are dying, most people can accomplish meaningful tasks and grow in ways that are important to them and to their families.

In my clinical hospice work, the conceptual model of lifelong human development has provided me with an orientation and thus has helped me to orient others. Years ago I began keeping notes on the developmental landmarks and "taskwork," as I call it, relevant to the end of life. I hoped that defining the landmarks might provide some light and offer a general sense of direction within this dim, foreboding landscape, and that naming the taskwork might provide paths for a person's individual journey.

This developmental work reliably enhances the quality of living.

The process is intriguingly similar to the stages of pediatric development. To the toddler, the world keeps shifting; her physical and emotional environments change frequently and in unpredictable ways. How she sees herself and how she is seen differ from month to month and, at times, week to week. What others expect of her continually changes. Within her body and her person, new needs regularly arise and must be satisfied. Life for the toddler presents fresh challenges that must be successfully negotiated, or she feels insecure. To the extent she persists in clinging to old strategies of navigating in the world and relating to others, there is distress. For some children, the rate of change proves too fast-- the extent of growth and development demanded by circumstances proves too large to compress into a few weeks' time, and, at least transiently, there is suffering.

Someone who is dying, like the developing child, goes through stages of discovery, insight, and adjustment to constantly changing circumstances in his person and in the ways people react to him. People who are dying often feel a sense of constant pressure to adapt to unwanted change. As a person's functioning declines, the physical environment becomes threatening. A trip to the bathroom may become an hour's chore and then, a few weeks later, a major event. On learning of the grave prognosis, family and friends may begin acting differently, becoming serious or even solemn in one's presence. People may avoid one out of their own emotional pain, leaving one feeling awkward and isolated, an innocent pariah. New strategies are urgently needed to forestall a sense of personal annihilation. Mastering the taskwork may involve personal struggle, and even suffering, yet it can lead to growth and dying well. The tasks are not easy. But as a dying person reaches developmental landmarks such as experienced love of self and others, the completion of relationships, the acceptance of the finality of one's life, and the achievement of a new sense of self despite one's impending demise, one's life and the lives of others are enriched.

For the growing child and her family, each developmental landmark is typically accompanied by feelings of mastery, expansion, a sense of wellness, and, at times, exhilaration. The same feelings are expressed in the stories of patients and families who may be said to have died well. Often the challenge for a family, loved ones, and other caregivers is to recognize the opportunities for growth and development and to help the dying person achieve them. This takes courage. It takes a willingness to talk about things usually avoided, like painful memories, hurt and buried feelings, and the pragmatic details of dying and death, including with whom and where, obituaries, cremation or burial, and funeral. The time of dying is a dark, foreboding place-- the end of the road, beyond which lies an unknown, terrifying terrain. But identifying the tasks and landmarks to be met can provide a reassuring map through an otherwise dim future. One way to start this journey is by asking "What would be left undone if I died today?" and "How can I live most fully in whatever time is left?" These questions can illuminate the tasks and the landmarks ahead.


© Copyright Ira Byock, M.D., 1997. All Rights Reserved. No portion of this work may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage or retrieval system now or hereafter invented, without permission in writing from the Publisher.