Cited by 733Patient Dignity and PrivacyPalliative Care and End-of-Life IssuesPalliative and Oncologic Care

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Dignity in the terminally ill: a developing empirical model

Chochinov, Harvey Max, Hack, Thomas, McClement, Susan, Kristjanson, Linda, Harlos, Mike·2002·Social Science & Medicine

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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.

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“Contrary to this present study, Chochinov’s dignity conservatory repertoire is neither gender-specific nor specifically based on experiences of older women with incurable cancer living at home (Chochinov et al., 2002).”
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“An empirical model of dignity developed by Chochinov, constructed by interviewing end stage cancer patients in Canada, [4] described dignity at end of life in three broad categories of ‘illness-related concerns’, ‘dignity”
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“Chochinov et al. (2002a,b) provided another theoretical framework that focuses on the person and developed the dignity-promoting model. Both models could be useful in striving to provide a meaningful existence and a good death for older people as per the palliative care philosophy. According to Frogatt (2006), the goa…”
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“On another level, however, dignity may be conceived of as an empirical and dynamic quality, as part of the person’s sense of identity in relation to physical, psychological, spiritual and social factors, all of which will be mediated by the experience of illness (Chochinov et al. 2002; Street and Kissane 2001).”
Background
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“[12], who had previously established the dignity model based on a qualitative research involving 50 end-of-life patients [13].”
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Caregivers? perceptions about terminally ill family members? quality of life
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“The qualitative work by Chochinov et al. (2002) regarding the concept of dignity led to the creation of the Model of Dignity of the terminally ill, which offered essential insights into how patients face terminal illness in terms of illness, social, and personal-related factors.”
BackgroundMethodInfluentialSelf-citation
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Self-citation
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“Sex N (%) Male 20 (33) 18 (36) 14 (39) Female 40 (67) 32 (64) 22 (61) Ethnic group N (%) White British 42 (70) 37 (74) 27 (75) White Irish 9 (15) 8 (16) 5 (13) White other 2 (3) 1 (2) 0 (0) Black Caribbean 2 (3) 1 (2) 1 (3) Black African 2 (3) 1 (2) 1 (3) Asian Indian 1 (2) 1 (2) 1 (3) Asian Pakistani 1 (2) 1 (2) 1 (3…”
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“Introduction Dignity is a construct characterized by the representation of the self, of the self from others’ point of view and of the interaction of the individual with the environment and social context (Chochinov et al., 2002; Rodríguez-Prat et al., 2016; Street & Kissane, 2001).”
Background
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“One example of a therapeutic regimen that employs these components in a systematic way to enhance patients’ hope and sense of dignity is that described by Chochinov and his colleagues [67, 68 ].”
Background
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“Dignity has been studied in patients facing the end of their lives (chochinov, Hack, mcclement, Kristjanson, & Harlos, 2002; Enes, 2003; Hack et al., 2004; Turner et al., 1996), but no research was located about dignity and the urban poor with advanced disease in the united states. many but not all…”
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“…2001; Kolarik et al., 2002; Tulsky & Arnold, 2002!. Advance care planning incorporates spiritual and emotional issues as they help define medical treatment decisions, as they relieve suffering, and as they provide meaning and dignity ~Breitbart, 2002; Chochinov et al., 2002; Kolarik et al., 2002!.”
Background
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“Research on dignity in the terminally-ill began to emerge with the seminal work of Chochinov et al. (2002), with the construction of the Dignity Model of the terminally-ill and the subsequent creation of dignity therapy (DT; Chochinov et al., 2005).”
BackgroundSelf-citation
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“An interview guide (Table 2), developed based on the research team’s previous experience in conducting qualitative studies (Sinclair, McClement, et al. 2016; Sinclair et al. 2017; Sinclair, Torres, et al. 2016; Sinclair 2011; Sinclair et al. 2012; Chochinov et al. 2002) was used for the interviews.”
Method
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“The findings were compared with Chochinov et al.’s dignity model.”
BackgroundMethodResultInfluential
The Illness Experience of Older Adults near the End of Life: a Systematic Review
Gruenewald, D. A., & White, E. (2006) · Anesthesiology Clinics of North America · doi:10.1016/j.atc.2005.12.003 · Cited by 26
“These preferences for care were extended to nonphysician providers as well [6,9–11,15,16,23,27,29,35–37].”
BackgroundInfluential
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Dönmez, Ç. F., & Johnston, B. M. (2020) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2020.103584 · Cited by 29
Promoting privacy and dignity for older patients in hospital
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A Narrative Review of Dignity Therapy Research
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Self-citation
Spiritual well-being, dignity-related distress and demoralisation at the end of life-effects of dignity therapy: a randomised controlled trial
Vincenzo, F. D., Lombardo, L., Iani, L., Maruelli, A., Durante, S., Ragghianti, M., Park, C. L., Innamorati, M., & Quinto, R. M. (2023) · BMJ Supportive & Palliative Care · doi:10.1136/spcare-2022-003696 · Cited by 24
“All my saints are within me”: Expressions of end-of-life spirituality
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“The importance of dignity as a predominant concept during the dying process is well supported in the palliative care literature (Chochinov et al., 2002; Chochinov, 2004).”
Background
Reflections on Using Biographical Approaches in End-of-Life Care
Lindqvist, O., Threlkeld, G., Street, A. F., & Tishelman, C. (2014) · Qualitative Health Research · doi:10.1177/1049732314549476 · Cited by 24
Perspectives of newly diagnosed advanced cancer patients receiving dignity therapy during cancer treatment
Dose, A. M., & Rhudy, L. M. (2017) · Supportive Care in Cancer · doi:10.1007/s00520-017-3833-2 · Cited by 24
“These individuals experience worsened quality of life (QOL) and suffer from symptoms of anxiety and depression due to disease progression, hopelessness, and loss of dignity [3–8].”
Influential
Czech Version of the Patient Dignity Inventory: Translation and Validation in Incurable Patients
Kisvetrová, H., Školoudík, D., Danielova, L., Langová, K., Váverková, R., Bretšnajdrová, M., & Yamada, Y. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2017.10.008 · Cited by 24
Reducing the potential for suffering in older adults with advanced cancer
Thompson, G. N., & Chochinov, H. M. (2010) · Palliative & Supportive Care · doi:10.1017/s1478951509990745 · Cited by 24
Self-citation
Dying with dignity according to Swedish medical students
Karlsson, M., Milberg, A., & Strang, P. M. (2005) · Supportive Care in Cancer · doi:10.1007/s00520-005-0893-5 · Cited by 24
“[5] based on their study of the terminally ill.”
Can personal dignity be assessed by others? A survey study comparing nursing home residents’ with family members’, nurses’ and physicians’ answers on the MIDAM-LTC
Oosterveld‐Vlug, M., Onwuteaka-Philipsen, B. D., Pasman, H. R. W., van Gennip, I. E., & de Vet, H. C. W. (2014) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2014.06.007 · Cited by 23
Requests to Forgo Potentially Life-Prolonging Treatment and to Hasten Death in Terminally Ill Cancer Patients: A Prospective Study
Georges, J., Onwuteaka-Philipsen, B. D., van der Heide, A., van der Wal, G., & van der Maas, P. J. (2006) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2005.06.013 · Cited by 23
A preliminary study of Patient Dignity Inventory validation among patients hospitalized in an acute psychiatric ward
Lorenzo, R. D., Cabri, G., Carretti, E., Galli, G., Giambalvo, N., Rioli, G., Saraceni, S., Spiga, G., Giovane, C. D., & Ferri, P. (2017) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s122423 · Cited by 23
Psychometric Properties of the Greek Version of the Patient Dignity Inventory in Advanced Cancer Patients
Parpa, E., Kostopoulou, S., Tsilika, E., Galanos, A., Katsaragakis, S., & Mystakidou, K. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2017.07.002 · Cited by 23
“More specifically, patients with psychological distressing symptoms were more l ik ly to feel anxious and depressed in accordance with previous findings (20,21).”
Result
Dignity therapy online: Piloting an online psychosocial intervention for people with terminal illness
Bentley, B., O’Connor, M., Williams, A., & Breen, L. J. (2020) · Digital Health · doi:10.1177/2055207620958527 · Cited by 23
“The psychotherapy was created by Professor Harvey Max Chochinov and colleagues after conducting foundational research that created a model for understanding dignity-related distress in the terminally ill.(4) Dignity therapy was pilot tested in 2005(3) followed by a large international randomised controlled trial in 20…”
Method
From Hope in Palliative Care to Hope as a Virtue and a Life Skill
Barilan, Y. M. (2012) · Project Muse (Johns Hopkins University) · Cited by 23
Dignity in Medicine: Definition, Assessment and Therapy
Grassi, L. G., Nanni, M. G., Riba, M., & Folesani, F. (2024) · Current Psychiatry Reports · doi:10.1007/s11920-024-01506-3 · Cited by 22
“In medicine, Chochinov et al. [11, 12] developed a possible structure of dignity as resulting from three primary sources (Table 1), which also defines the relationship between patients and their health care professionals [13, 14].”
Background
Improving Dignity of Care in Community-Dwelling Elderly Patients with Cognitive Decline and Their Caregivers. The Role of Dignity Therapy
Ounalli, H., Mamo, D. C., Testoni, I., Murri, M. B., Caruso, R., & Grassi, L. G. (2020) · Behavioral Sciences · doi:10.3390/bs10120178 · Cited by 23
Control in patients with advanced cancer: an interpretative phenomenological study
Rodríguez‐Prat, A., Pergolizzi, D., Crespo, I., Balaguer, A., Porta-Sales, J., & Monforte‐Royo, C. (2022) · BMC Palliative Care · doi:10.1186/s12904-022-00984-7 · Cited by 22
“Some studies have shown patients with advanced illnesses voice a desire for control as essential to personal identity and wellbeing (1), feeling needs are met (2), preferences for care and sense of dignity (3, 4).”
Background
A Poetical Journey: The Evolution of a Research Question
Leung, D. Y. L., & Lapum, J. L. (2005) · International Journal of Qualitative Methods · doi:10.1177/160940690500400305 · Cited by 20
A preliminary study to develop an intervention to facilitate communication between couples in advanced cancer
Mowll, J., Lobb, E. A., Lane, L. G., Lacey, J., Chochinov, H. M., Kelly, B. J., Agar, M. R., Links, M. J., & Kearsley, J. H. (2015) · Palliative & Supportive Care · doi:10.1017/s1478951514001333 · Cited by 22
“The Patient Dignity Inventory was developed from a model of dignity in the terminally ill that emerged from qualitative studies identifying a broad range of issues that can be subsumed under the heading of “dignity-related distress” (Chochinov et al., 2002; 2005; 2006; 2008; 2009; 2012).”
Self-citation
A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS)
Rudilla, D., Oliver, A., Galiana, L., & Barreto, P. (2015) · Palliative & Supportive Care · doi:10.1017/s1478951515000747 · Cited by 23
“Can You Give Me Respect?” Experiences of the Urban Poor on a Dedicated AIDS Nursing Home Unit
Hughes, A. M., Davies, B. I., & Guðmundsdóttir, M. (2008) · Journal of the Association of Nurses in AIDS Care · doi:10.1016/j.jana.2008.04.008 · Cited by 22
“…to international human rights, disability, aging, bioethics, and EOL care most specifically in the United States, in the context of physician-assisted suicide for persons with terminal illnesses such as cancer or AIDS (Chochinov, Hack, McClement, Kristjanson, & Harlos, 2002; Jacobson, 2007).”
Background
Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?
Bentley, B., Aoun, S. M., O’Connor, M., Breen, L. J., & Chochinov, H. M. (2012) · BMC Palliative Care · doi:10.1186/1472-684x-11-18 · Cited by 22
“Dignity therapy, a brief psychotherapeutic intervention based on empirical research into the concept of dignity at the end of life [15], has proven successful at increasing hope, sense of meaning and will to live in a palliative care population, where most patients had cancer diagnoses.”
BackgroundSelf-citation
Compassion in the nursing curriculum: making it more explicit.
Adamson, E., & Dewar, B. J. (2011) · Edinburgh Napier Research Repository (Edinburgh Napier University) · Cited by 21
Assessing Symptoms, Concerns, and Quality of Life in Noncancer Patients at End of Life: How Concordant Are Patients and Family Proxy Members?
Hack, T. F., McClement, S., Chochinov, H. M., Dufault, B., Johnston, W. S. W., Enns, M. W., Thompson, G. N., Harlos, M., Damant, R. W., Ramsey, C. D., et al. (2018) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2018.07.019 · Cited by 21
Self-citation
Four aspects of self-image close to death at home
Goliath, I., Ternestedt, B., Sahlberg‐Blom, E., Hellström, I., & Sandberg, J. (2011) · International Journal of Qualitative Studies on Health and Well-Being · doi:10.3402/qhw.v6i2.5931 · Cited by 21
A Dignified Death and Identity‐Promoting Care
Ternestedt, B. (2009) · doi:10.1002/9781444316414.ch7 · Cited by 21
Developing an Instrument for Measuring Human Dignity and Its Relationship to Health in Palestinian Refugees
Khatib, R., & Armenian, H. K. (2010) · World Medical & Health Policy · doi:10.2202/1948-4682.1077 · Cited by 20
Dignity of the patient-–family unit: further understanding in hospice palliative care
Guo, Q., Zheng, R., Jacelon, C. S., McClement, S., Thompson, G. N., & Chochinov, H. M. (2019) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2019-001834 · Cited by 20
Self-citation
Clinical problems at the end of life in a Swedish population, including the role of advancing age and physical and cognitive function
Jakobsson, E., Gaston‐Johansson, F., Öhlén, J., & Bergh, I. H. (2008) · Scandinavian Journal of Public Health · doi:10.1177/1403494807085375 · Cited by 20
Piloting an abbreviated dignity therapy intervention using a legacy‐building web portal for adults with terminal cancer: a feasibility and acceptability study
Bernat, J. K., Helft, P. R., Wilhelm, L. R., Hook, N. E., Brown, L. F., Althouse, S. K., & Johns, S. A. (2015) · Psycho-Oncology · doi:10.1002/pon.3790 · Cited by 20
“DT is grounded in the empirically derived dignity model [4].”
BackgroundMethod
Preparation for the end of life and life completion during late-stage lung cancer: An exploratory analysis
Adorno, G., & Wallace, C. L. (2017) · Palliative & Supportive Care · doi:10.1017/s1478951516001012 · Cited by 20
“(SPB) at the end of life consists of individual concerns about integrity of self—including dignity, dependency, physical care needs (Chochinov et al., 2002), and sociorelational dynamics whereby the patient is emotionally concerned about significant others (McPherson et al.”
Background
The development of a family participatory dignity therapy programme for patients with haematologic neoplasms and their family caregivers in China: A feasibility study
Wang, C., Chen, J., Wang, Y., Hu, R., & Wu, Y. (2020) · European Journal of Cancer Care · doi:10.1111/ecc.13204 · Cited by 20
Creating Discursive Order at the End of Life
Schryer, C. F., McDougall, A., Tait, G. R., & Lingard, L. A. (2012) · Written Communication · doi:10.1177/0741088312439877 · Cited by 22
A community-of-care: the integration of a palliative approach within residential aged care facilities in Australia
McVey, P., McKenzie, H. A., & White, K. (2013) · Health & Social Care in the Community · doi:10.1111/hsc.12077 · Cited by 20
Dignity in people with dementia: A concept analysis
Zhang, Y., Lingler, J. H., Bender, C. M., & Seaman, J. B. (2024) · Nursing Ethics · doi:10.1177/09697330241262469 · Cited by 20
“45,46 Conversely, relative dignity is a more mutable subdimension with more lability and variability.”
Development and Pilot Evaluation of a Novel Dignity-Conserving End-of-Life (EoL) Care Model for Nursing Homes in Chinese Societies
Ho, A. H. Y., Dai, A. A. N., Lam, S.-H., Wong, S. W. P., Tsui, A. L. M., Tang, J. C. S., & LOU, V. W. Q. (2015) · The Gerontologist · doi:10.1093/geront/gnv037 · Cited by 21
Development and validation of a Dignity in Care Scale for Nurses
Lin, Y., & Tsai, Y. (2019) · Nursing Ethics · doi:10.1177/0969733018819120 · Cited by 19
Effectiveness of collage activity based on a life review in elderly cancer patients: A preliminary study
Sakaguchi, S., & Okamura, H. (2014) · Palliative & Supportive Care · doi:10.1017/s1478951514000194 · Cited by 19
The Institut Català D'Oncologia model of Palliative Care: An Integrated and Comprehensive Framework to Address the Essential needs of Patients with Advanced Cancer
Maté-Méndez, J., González‐Barboteo, J., Calsina-Berna, A., Mateo-Ortega, D., Codorniu-Zamora, N., Limonero, J. T., Trelis-Navarro, J., Bermúdez, G. S., & Gómez‐Batiste, X. (2013) · Journal of Palliative Care · doi:10.1177/082585971302900406 · Cited by 19
“Chochinov (26) offers dignity therapy, a briefly employed, individualized approach to relieving the existential and psychosocial suffering of patients at the end of life (26, 27).”
Background
MRC guidance on developing and evaluating complex interventions:Application to research on palliative and end of life care
Evans, C., Higginson, I. J., & Manthorpe, J. (2013) · Research Portal (King's College London) · Cited by 19
PERCEPTION OF DIGNITY OF PATIENTS IN PALLIATIVE CARE
Franco, M. E., Salvetti, M. D. G., Donato, S. C. T., de Carvalho, R. T., & Franck, E. M. (2019) · Texto & Contexto - Enfermagem · doi:10.1590/1980-265x-tce-2018-0142 · Cited by 19
Enhancing end-of-life care with dignity: characterizing hospice nursing in Romania
Vosit-Steller, J., White, P., Barron, A., Gerzevitz, D., & Morse, A. B. (2010) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2010.16.9.78645 · Cited by 19
Through the looking glass: good looks and dignity in care
Pols, J. J. (2013) · Medicine Health Care and Philosophy · doi:10.1007/s11019-013-9483-3 · Cited by 19
“…of Amsterdam, Amsterdam, The Netherlands e-mail: a.j.pols@amc.uva.nl 1 Qualitative studies of dignity in medicine tend to analyse dignity by listing its components, or the elements of dignity mentioned in a particular care situation (see e.g. Chochinov et al. 2002; Jacobson 2009; Baillie 2007).”
Exploring the impact of dignity therapy on distressed patients with advanced cancer: three case studies
HALL, S. L., Goddard, C., Martin, P., Opio, D., & Speck, P. W. (2012) · Psycho-Oncology · doi:10.1002/pon.3206 · Cited by 19
“Seven of the 22 themes from a model of dignity in the terminally ill [2] informed the structure, content and therapeutic tone of the intervention: generativity, continuity of self, role preservation, maintenance of pride, hopefulness, aftermath concerns and care tenor.”
BackgroundMethod
Influences on place of death in Botswana
Lazenby, M., Ma, T., Moffat, H., Funk, M., Knobf, M. T., & McCorkle, R. C. (2010) · Palliative & Supportive Care · doi:10.1017/s1478951509990939 · Cited by 18
“Those who are at the end of life and those who care for them may find that choosing the place of death gives them some control (Chochinov et al., 2002; Tang et al., 2008; Tang et al., 2009).”
Background
Dignity and Predictors of Its Change Among Inpatients in Long-Term Care
Kisvetrová, H., Tomanová, J., Hanáčková, R., Greaves, P. J., & Steven, A. (2021) · Clinical Nursing Research · doi:10.1177/10547738211036969 · Cited by 18
“All these factors are encompassed in the Model of Dignity (Chochinov et al., 2002), which covers a wide range of issues that may endanger the patient’s dignity including; physical, psychological, social, existential, and spiritual factors.”
BackgroundInfluential
Legacy in End-of-Life Care: A Concept Analysis
Timóteo, C., Vitorino, J., Ali, A. M., & Laranjeira, C. (2024) · Nursing Reports · doi:10.3390/nursrep14030177 · Cited by 23
“By sharing something of themselves with others, the human person materializes their gift, expanding their shared love in the present, relinquishing their intimacy and isolation [6,7], projecting themselves into future generations.”
Background
Factors affecting dignity of patients with multiple sclerosis
Sharifi, S., Borhani, F., & Abbaszadeh, A. (2016) · Scandinavian Journal of Caring Sciences · doi:10.1111/scs.12299 · Cited by 18

Authors: Chochinov, H. M., Hack, T., McClement, S., Kristjanson, L., & Harlos, M.
Affiliations: CancerCare Manitoba (CA)
University of Manitoba (CA)
Edith Cowan University (AU)
St. Boniface Hospital (CA)
Corresponding author: Chochinov, Harvey Max
ORCID: Chochinov, Harvey Max
Hack, Thomas
McClement, Susan
Venue: Social Science & Medicine
Publisher: Elsevier BV
Published: 2002-02
Volume: 54
Issue: 3
Pages: 433-443
ISSN: 0277-9536 (ISSN-L)
DOI: 10.1016/s0277-9536(01)00084-3
OpenAlex: W2015893364
Cited by: 733
References: 45
Citations by year: 2026: 34 · 2025: 37 · 2024: 31 · 2023: 30 · 2022: 34 · 2021: 38 · 2020: 34 · 2019: 25 · 2018: 28 · 2017: 40 · 2016: 35 · 2015: 30 · 2014: 30 · 2013: 39 · 2012: 30
FWCI: 19.85
Type: journal article
Language: en
Open access: closed
Licence: www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations: Social Science & Medicine (publishedVersion)
PubMed (publishedVersion)
Research Online (Edith Cowan University) (submittedVersion)
RePEc: Research Papers in Economics (submittedVersion)
eSpace (Curtin University) (submittedVersion)
DigitalGeorgetown (Georgetown University Library) (submittedVersion)
Swinburne figshare (Swinburne University of Technology) (submittedVersion)
Funders: University of Manitoba
Topics: Health Sciences › Nursing › Issues, ethics and legal aspects › Patient Dignity and Privacy
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Keywords: human dignity, dying patients, advanced cancer, end-of-life care, palliative care, patient perspectives, coping with terminal illness, social dignity, quality of life
MeSH terms: Activities of Daily Living, Adaptation, Psychological, Anecdotes as Topic, Attitude to Death, Family Relations, Humans, Interviews as Topic, Manitoba, Neoplasms, Professional-Patient Relations, Quality of Life, Right to Die, Skilled Nursing Facilities, Terminal Care, Cost of Illness, Terminally Ill

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Dignity in the terminally ill: a developing empirical model

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