Dignity in the terminally ill: a cross-sectional, cohort study

doi:10.1016/S0140-6736(02)12022-8

The Lancet

Volume 360, Issue 9350, 21–28 December 2002, Pages 2026-2030

https://doi.org/10.1016/S0140-6736(02)12022-8 Get rights and content

Summary

Background

Considerations of dignity are often raised in reference to the care of dying patients. However, little research that addresses this issue has been done. Our aim was to identify the extent to which dying patients perceive they are able to maintain a sense of dignity, and to ascertain how demographic and disease-specific variables relate to the issue of dignity in these individuals.

Methods

We did a cross-sectional study of a cohort of terminally ill patients with cancer, who had a life expectancy of less than 6 months. We enrolled 213 patients from two palliative care units in Winnipeg, Canada, and asked them to rate their sense of dignity. Our main outcome measures included: a 7-point sense of dignity item; the symptom distress scale; the McGill pain questionnaire; the index of independence in activities of daily living (IADL); a quality of life scale; a brief battery of self-report measures, including screening for desire for death, anxiety, hopelessness, and will to live; burden to others; and requirement for social support.

Findings

16 of 213 patients (7·5%; 95% CI 4–11) indicated that loss of dignity was a great concern. These patients were far more than likely than the rest of the cohort to report psychological distress and symptom distress, heightened dependency needs, and loss of will to live.

Interpretation

Loss of dignity is closely associated with certain types of distress often seen among the terminally ill. Preservation of dignity should be an overall aim of treatment and care in patients who are nearing death.

Introduction

Considerations of dignity are often raised in reference to the care of dying patients.1, 2 For many palliative patients with cancer, their families, and caregivers, dignity conveys an inherent respect to be granted to patients in preparation for death. Support for assisted suicide or euthanasia is often based on a concern for patients' dignity, with those on either side of this debate invoking considerations of dignity at the heart of their respective positions.3, 4, 5, 6, 7, 8, 9 Nevertheless, little research that addresses the issue of dignity, and involves dying patients as primary informants, has been done.10, 11 Our aim was to assess the extent to which patients near the end of life perceive that they are able to maintain a sense of dignity, and to identify how various demographic and disease-specific variables are related to the issue of dignity in the terminally ill.

Section snippets

Participants

Between June, 1996, and May, 2000, we recruited individuals with cancer from two palliative care units in Winnipeg, Canada. The units are located at St Boniface General Hospital and the Riverview Health Centre; both are urban, extended-care hospitals with specialty palliative care units. The units provide inpatient, and coordinate community-based, end-of-life care services. The medical status of every patient at these units was reviewed by the treatment staff, who independently ascertained

Results

Of the 369 patients identified as candidates, five died before the interview could take place, 13 were transferred to a different care setting, and one denied having cancer. Furthermore, 55 patients had sufficient symptom distress or further deterioration in their general condition, or both, that they were unable to participate. Of the remaining 295 patients, 213 (72%) agreed to participate in the study (43 outpatients, 170 inpatients), with a median length of survival from the time of study

Discussion

Although nearly half the patients in our sample reported at least some, or occasional, dignity concerns, most patients claimed a strong sense of personal dignity. This finding suggests that a person's sense of dignity is a particularly resilient construct and, in most instances, is able to withstand the various physical and psychological challenges that face patients who are terminally ill. Although the process of dying is often described in terms of inevitable indignities, reports from

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Family involvement and comfort are equally important in palliative care. Dignity undertook a new meaning and novel challenges as a result of restrictions on visits and companionship during the pandemic. Family-centered family dignity interventions have been shown to be effective in increasing patients’ sense of dignity, increasing levels of hope, and reducing psychological distress; however, the effectiveness in enhancing family adaptability and intimacy in the survivor-caregiver binary and reducing expected grief have been inconclusive.
The primary objective of this study was to assess the efficacy of family dignity interventions on family adaptability and cohesion. The secondary objective was to explore the effects of the interventions on anticipatory grief and psychological distress, and the lasting effect 1 month after the intervention.
A single-blinded, two-arm parallel group, randomized controlled trial was conducted in China.
and methods: Ninety-eight dyads who met the inclusion criteria were randomly assigned to the family dignity intervention (n = 51) or standard palliative care group (n = 47) between June and August 2022. Study outcomes were measured at baseline, immediately post-intervention, and at the 1-month follow-up post-intervention evaluation. Data were analyzed using the Kolmogorov-Smirnov test, chi-square test, Fisher's exact test, independent sample t-test, Wilcoxon rank-sum test, and generalized estimation equations. The Intention-To-Treat analysis was performed for all available data.
In comparison to the control group, significant improvements in family adaptability and cohesion and anticipatory grief over post-intervention and 1-month follow-up were demonstrated among the patients in the intervention group. The intervention group of caregivers had significant improvement in anticipatory grief at post-intervention and 1-month follow-up. The level of psychological distress was significantly lower in the intervention group than the control group (p < 0.05) at 1-month follow-up but the differences were not statistically significant at post-intervention. All outcomes showed clear differences from baseline after the intervention and at the 1-month follow-up evaluation but not between post-intervention and at the 1-month follow-up evaluation.
This study further verifies the actual effect of family dignity intervention program through randomized controlled trials, and provides a reference for improving the family relationship between advanced cancer patients and their family caregivers, and improving their mental health. The addition of family dignity intervention to standard palliative care greatly increased the adaptability and cohesion between survivors and their families, lessened the anticipatory grief of the survivor-caregiver pair, and relieved caregivers’ anxiety and despair. We did not detect a statistically significant difference between post-intervention and the 1-month follow-up evaluation, suggesting that the intervention may have a durable impact at least 1 month.
Examining Moderation of Dignity Therapy Effects by Symptom Burden or Religious/Spiritual Struggles
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Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes.
To explore the effects of symptom burden and R/S struggles on DT outcomes.
This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S).
DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures.
Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.
Psychosocial burden in transfusion dependent beta-thalassemia patients and its impact on the quality of life and the problem of dignity
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Beta-thalassemia major is a genetic blood disorder that impacts hemoglobin production with several symptoms that decrease quality of life in patients. Blood transfusions may help them to regulate their hemoglobin needs, though this is a lifelong intervention. Struggling with dependent blood transfusion status impacts patients greatly including their bio, psycho, social, and spiritual health, potentially raising a bioethical issue related to human dignity.
Dignity and Related Factors in Patients with Cancer: A Cross-Sectional Study
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Dignity is a basic human right that is related to psychological distress factors in patients with cancer such as depression and demoralization. Hence, the dignity issue is of great importance to healthcare professionals. The present study aimed to advise healthcare professionals regarding the related distress factors of dignity in patients with cancer by investigating its relationship with patients’ demographics, disease characteristics, and psychological distress.
This was a cross-sectional study design. A convenience sample of 267 patients with cancer from a medical center was recruited into this study. Each patient completed demographics and disease characteristics questionnaires, the Patient Dignity Inventory Mandarin Version, the Demoralization Scale Mandarin Version (DS-MV), and the Patient Health Questionnaire-9 (PHQ-9). Data were analyzed with SPSS 22.0 software.
Dignity was significantly correlated with age, demoralization, and depression. Cancer patients aged 65 or above were more likely to have a lower sense of dignity. In the present study, the sensitivity and specificity of the Patient Dignity Inventory Mandarin Version for demoralization (DS-MV≥30) were 84.8% and 79.1% and for depression (PHQ-9≥10) were 73.8% and 70.9% in patients with cancer with an aggregate score of 35 or above.
Dignity is significantly correlated with personal demographic characteristics and psychological distress in patients with cancer. The results provide reference data for healthcare professionals to understand and enable dignity in patients with cancer and aid in the development of methods that promote their dignity.
The sense of dignity care and the perceived social support for hospitalized elderly patients
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Citation Excerpt :
The PDI is a 25-item scale. After doing psychometrics in x, it contains four dimensions include loss of human value (11 questions), emotional distress and uncertainty (8 questions), changes in ability and mental image (4 questions), and loss of independence(2 questions)(Abbaszadeh et al., 2015). When patients are asked to complete the 25-item PDI.
Hospitalization is a common experience among elders all over the world, which often is associated with a high level of stress. These stressors can affect Patient Dignity (PD). In addition, the elders rely on many social support networks for aging-related challenges. This study aimed to determine the relationship between PD and perceived social support (PSS) in hospitalized elders.
In this cross-sectional study, the samples of this research were 360 older people 60 years old and older who were hospitalized in educational hospitals in Khorramabad city (Lorestan province in the western area of Iran). The applied instruments in this research included; demographic characteristics, PD, and the PSS questionnaires.
This study showed that %92.2 of hospitalized elders had at least one underlying disease. The men significantly had a lower sense of dignity in comparison with women. There was a significant statistical correlation between the increase in the PSS and the increase in the sense of dignity in elders.
The elders perceived more social support and had more of a sense of dignity. The men had lower dignity in comparison with their women counterparts. Also, the elders who suffered an underlying disease had a lower sense of dignity.
Spirituality and the quality of life of cancer patients: An antidepressant effect
2022, Encephale
Cancer is the second leading cause of mortality in the world, and represents an economic, social and psychological burden. Scientific studies have focused on psychosocial coping mechanisms of patients and on factors improving their quality of life. Thus, the aim of the present study is to analyze the influence that spirituality would have on the quality of life of Lebanese cancer patients and to identify whether the influence on quality of life is mediated through a decreased depression.
This is a cross-sectional study targeting cancer patients in the hemato-oncology department of the Hôtel-Dieu de France Hospital (Beirut, Lebanon). It is based on a questionnaire composed of three parts: EQ-5D-5L, PHQ-9, and FACIT-Sp-12. Likewise, a control group suffering from chronic diseases and treated in the hospital was questioned. Univariate and multivariate analysis were conducted to assess the relationship between the different questionnaires for controls and for cancer patients.
Thirty-nine cancer patients and eight control patients were questioned. In the univariate analysis, there was no relationship between depression and spirituality nor for spirituality and quality of life. After controlling for depression, an inverse correlation between quality of life and spirituality was shown.
Our study is a pilot study which for the first time investigates the implication of depression in a “spirituality-quality of life” association. There is no clear association of spirituality with quality of life. In fact, the physical and psychological burden of chronically ill patients could exceed and render insignificant a possible impact of spirituality on quality of life.
Étant la deuxième cause de mortalité et de morbidité, le cancer a des effets considérables sur la santé des individus. Il représente également un fardeau économique, social et psychologique. Des études scientifiques se focalisent sur les mécanismes d’adaptation psychosociale des patients et sur les facteurs qui améliorent leur qualité de vie. Dans ce sens, la spiritualité représente un facteur majeur sur lequel pourraient s’appuyer les patients libanais quand ils sont atteints d’une maladie aussi dramatique que le cancer. Ainsi, la présente étude vise, d’une part, à analyser l’influence que la spiritualité aurait sur la qualité de vie des malades dans un échantillon de la population libanaise et, d’autre part, à identifier si l’influence sur la qualité de vie est tributaire d’une diminution de la dépression chez les patients cancéreux.
Il s’agit d’une étude transversale qui vise les patients cancéreux du service d’hémato-oncologie de l’Hôtel-Dieu de France (Beyrouth, Liban) concernant la spiritualité et la qualité de vie. Elle se base sur un questionnaire composé de trois parties: EQ-5D-5L axé sur la qualité de vie du patient, PHQ-9 permet un dépistage rapide de la dépression et FACIT-Sp-12 (Version 4) qui score la spiritualité du patient. Il a été communiqué par interrogatoire direct à une population atteinte de tumeur solide ou lymphome recevant un traitement anti-cancéreux en intra-veineux et en intra-hospitalier. De même, un groupe contrôle atteint de maladie chronique traité en intra-hospitalier issu des services de gastro-entérologie, néphrologie et neurologie a été interrogé.
Nous avons récolté 39 patients cancéreux et 8 patients contrôles. Parmi ces patients cancéreux, 67 % sont des femmes. La plupart des patients métastatiques avec 92 % traités par CT, 31 % par RT, et 41 % précédemment opérés et non hospitalisé pour chirurgie. Au total, 20 % de ces patients sont actuellement en rechute. En corrélation univariée, nous avons une absence de relation entre dépression et spiritualité de même pour la spiritualité et la qualité de vie. Par contre, nous avons eu une relation négative entre dépression et qualité de vie. Donc en corrélation partielle, suite à l’ajustement de la relation entre spiritualité et qualité de vie en tenant compte de la dépression la corrélation entre spiritualité et qualité de vie devient significative. On remarque avoir une corrélation inverse c’est-à-dire les gens avec la pire qualité de vie sont les plus religieux. Durant le recrutement des patients contrôles, nous avons tenu à un appariement âge/sexe avec le groupe cancéreux. Le groupe contrôle se répartit en 50 % de patients de sexe féminin et 50 % de patients de sexe masculin. Les patients étaient issus des services de néphrologie, gastroentérologie, médecine interne, neurologie et pneumologie.
Notre étude est une étude pilote qui recherche pour la première fois l’implication de la dépression dans une association « spiritualité-qualité de vie ». Il n’y a pas d’association claire de la spiritualité avec la qualité de vie dans le groupe de patients cancéreux ou dans le groupe contrôle. Le poids physique et psychologique des malades chroniques pourrait surpasser et rendre insignifiant un possible impact de la spiritualité sur la qualité de vie. De surcroît, la singularité de la société libanaise, en termes de spiritualité, pourrait augmenter l’écart entre les personnes interrogées dans le cadre de cette étude.

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ArticlesDignity in the terminally ill: a cross-sectional, cohort study

Summary

Background

Methods

Findings

Interpretation

Introduction

Section snippets

Participants

Results

Discussion

Lancet

Lancet

Soc Sci Med

Pain

Lancet

Soc Sci Med

Psychosomatics

Psychosomatics

Psychosomatics

Pain

Good care of the dying patient

JAMA

Dying with dignity: illusion, hope or human right?

World Health Forum

Physician-assisted suicide and euthanasia in Washington state: patient requests and physician responses

J Am Med Assoc

Physicians' experiences with the Oregon Death with Dignity Act

N Engl J Med

Articles
Dignity in the terminally ill: a cross-sectional, cohort study