Dignity in the terminally ill: a developing empirical model

Abstract

Despite use of the term dignity in arguments for and against a patient's self-governance in matters pertaining to death, there is little empirical research on how this term has been used by patients who are nearing death. The objective of this study was to determine how dying patients understand and define the term dignity, in order to develop a model of dignity in the terminally ill. A semi-structured interview was designed to explore how patients cope with their advanced cancer and to detail their perceptions of dignity. Interviews were audiotaped and transcribed verbatim. A consecutive sample of 50 consenting patients with advanced terminal cancer were recruited over a 15-month period of time from an urban extended care hospital housing a specialized unit for palliative care. This unit provides both inpatient services, and coordinates end-of-life care community based programming. Data were analysed using latent content analysis and constant comparison techniques. Four members of the research team independently coded the transcribed data, to develop conceptually meaningful categories of responses. Operational definitions were written for major categories, themes and sub-themes. Three major categories emerged from the qualitative analysis, including illness-related concerns; dignity conserving repertoire; and social dignity inventory. These broad categories and their carefully defined themes and sub-themes form the foundation for an emerging model of dignity amongst the dying. The concept of dignity and the dignity model offer a way of understanding how patients face advancing terminal illness. This will serve to promote dignity and the quality of life of patients nearing death.

Introduction

For many palliative cancer patients, their families, and caregivers, the term dignity conveys an inherent respect to be granted patients in preparation for death (Abiven, 1991; Council on Scientific Affairs, 1996; Kade, 2000; Pannuti & Tanneberger, 1993). Emphasis on the terminally ill individual has been heightened by public and health professional concerns regarding the rights and needs of dying patients. Support for assisted suicide or euthanasia is often anchored by concerns for the patient's dignity (Back, Wallace, Starks, & Pearlman, 1996; Emanuel, Fairclough, Daniels, & Clarridge, 1996; Ganzini et al., 2000; Meier et al., 1998; Sullivan, Hedberg, & Fleming, 2000). Loss of dignity is one of the most common reasons physicians cite when asked why they agreed to a patient's request for euthanasia or some form of self-assisted suicide (Ganzini et al., 2000; Meier et al., 1998; Van der Maas, Van Delden, Pijnenborg, & Looman, 1991). However, it is not uncommon for people on either side of this debate to invoke considerations of dignity as lying at the heart of their respective positions (Pullman, 1996). Notions of death with dignity may also guide health care professionals in the manner with which they attend to those preparing for death.

Despite the use of the term dignity in arguments for and against a patient's self-governance in matters pertaining to death, there is a notable lack of empirical data examining dignity from the vantagepoint of patients themselves. More specifically, no studies have addressed this concept in the context of the terminally ill. Latimer (1991) argued that palliative care must be philosophically rooted in an acknowledgement of the inherent dignity of individuals, and Geyman (1983) listed dignity as one of the five basic requirements that must be satisfied in caring for dying patients. However, neither provided a definition of dignity, empirically derived or otherwise. Although dictionary definitions of the term are available, patients’ and health care providers’ definitions and conceptualizations of dignity are noticeably absent in the scientific research literature. This lack of precision and possibly consensus or understanding about the term dignity has important care and policy-related implications.

Although some studies have argued that palliative care must be philosophically rooted in an acknowledgment of the inherent dignity of individuals (Brant, 1998; Bronstein & Jones, 1986; Coppens, 1998; Madan, 1992; Pickett, 1993; Quill, 1994; Sampaio, 1992), the construct of dignity remains poorly defined. The goal of this current study was to explicate the meaning of dignity for palliative cancer patients and to develop a conceptual framework that describes dignity from the perspective of individuals living with an advanced cancer diagnosis. As part of a comprehensive semi-structured interview, we asked dying patients how they understood and defined the term dignity, and what experiences or issues supported or undermined their personal sense of dignity. Given the fact that loss of dignity may be a final common pathway leading patients towards death-hastening decisions, we also asked patients about the role their perceptions of dignity might play in considering death-hastening measures. We offer these findings as an initial framework for understanding the term dignity from the perspective of terminally ill cancer patients.