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.
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Dignity therapy is based on a theoretical model of dignity in the terminally ill and aims to reduce dignity-related distress while enhancing hope and meaning.
“Dignity therapy is based on a theoretical model of dignity in the terminally ill [3] and its purpose is to reduce dignity-related distress while enhancing hope and meaning [4].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [3]
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Prognostic acceptance and the well-being of patients receiving palliative care for cancer
Thompson, G. N., Chochinov, H. M., Wilson, K. G., McPherson, C. J., Chary, S., O'Shea, F. M., Kuhl, D. R., Fainsinger, R. L., Gagnon, P. R., & Macmillan, K. A. (2009) · Journal of Clinical Oncology · doi:10.1200/jco.2009.22.9799 · Cited by 108 · see citing works
Self-citationLiving with a terminal illness: patients’ priorities
Carter, H., MacLeod, R., Brander, P., & McPherson, K. M. (2004) · Journal of Advanced Nursing · doi:10.1046/j.1365-2648.2003.02953.x · Cited by 106 · see citing works
Dignity and Distress towards the End of Life across Four Non-Cancer Populations
Chochinov, H. M., Johnston, W. S. W., McClement, S., Hack, T. F., Dufault, B., Enns, M. W., Thompson, G. N., Harlos, M., Damant, R. W., Ramsey, C. D., et al. (2016) · PLoS ONE · doi:10.1371/journal.pone.0147607 · Cited by 104 · see citing works
“Consistent with previous studies [15,17,54,55], losing dignity is affiliated with an assault on personhood, and feeling a diminished sense of worth or value; a burden to others; not feeling in control of one’s life; having unfinished business; worrying about the future, while expressing dissatisfaction with the past—a…”
Self-citationPalliative Care of Children With Brain Tumors: A Parental Perspective
Zelcer, S., Cataudella, D., Cairney, A. E. L., & Bannister, S. L. (2010) · Archives of Pediatrics & Adolescent Medicine · doi:10.1001/archpediatrics.2009.284 · Cited by 99 · see citing works
“D URING THE PAST DECADE, many studies have documented substantial suffering among children dying of cancer.(1-23) Gaps in the palliative care of these children and their families have been identified, including inadequate relief of pain and other symptoms,(2) communication barriers between the family and the health ca…”
BackgroundAndersson, M., Hallberg, I. R., & Edberg, A. (2007) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2007.04.003 · Cited by 103 · see citing works
“Chochinov et al. (2002), focusing on dying persons’ understanding of dignity, suggested that dignity includes ‘‘illness-related concerns’’, ‘‘dignity-conserving repertoire’’ and ‘‘social dignity inventory’’.”
HALL, S. L., Goddard, C., Opio, D., Speck, P. W., Martin, P., & Higginson, I. J. (2011) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2011-000054 · Cited by 103 · see citing works
Tang, S. T., Liu, T., Lai, M., Liu, L., Chen, C., & Koong, S.-L. (2006) · Cancer Investigation · doi:10.1080/07357900600705284 · Cited by 103 · see citing works
“Scholars (36, 37) suggested that to maintain dignity, terminally-ill cancer patients must have a sense of control over their dying circumstances and must be able to make their own decisions and to preside over their own dying.”
BackgroundOosterveld‐Vlug, M., Pasman, H. R. W., van Gennip, I. E., Muller, M. T., Willems, D. L., & Onwuteaka-Philipsen, B. D. (2013) · Journal of Advanced Nursing · doi:10.1111/jan.12171 · Cited by 102 · see citing works
Dignity and psychotherapeutic considerations in end-of-life care
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2004) · Journal of Palliative Care · doi:10.1177/082585970402000303 · Cited by 99 · see citing works
“Our research on the issue of dying with dignity has also included qualitative studies, yielding an empirically based model of dignity in the terminally ill (13,55).”
BackgroundSelf-citationLloyd, A., Kendall, M., Starr, J. M., & Murray, S. A. (2016) · BMC Geriatrics · doi:10.1186/s12877-016-0350-y · Cited by 101 · see citing works
“This was especially acute in an institution as their physical limitations denied them the freedom to ‘walk out’ and relates to affronts to dignity at feeling in the control of other people [34, 35].”
Backgroundvan Gennip, I. E., Pasman, H. R. W., Oosterveld‐Vlug, M., Willems, D. L., & Onwuteaka-Philipsen, B. D. (2013) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2012.12.014 · Cited by 100 · see citing works
Vehling, S., Lehmann, C., Oechsle, K., Bokemeyer, C., Krüll, A., Koch, U., & Mehnert, A. (2012) · Psycho-Oncology · doi:10.1002/pon.1866 · Cited by 97 · see citing works
“Accordingly, physical symptoms can, beyond potentially compromising a patient’s sense of dignity through leading to feelings of dependency or being a burden to others [49], force patients to abandon worthwhile goals or plans formerly providing a framework of personal meaning [42,50].”
BackgroundXiao, J., Chow, K. M., Liu, Y., & Chan, C. W. H. (2019) · Psycho-Oncology · doi:10.1002/pon.5162 · Cited by 95 · see citing works
Mason, B. L., Nanton, V., Epiphaniou, E., Murray, S. A., Donaldson, A., Shipman, C., Daveson, B. A., Harding, R., Higginson, I. J., Munday, D., et al. (2014) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2013-000639 · Cited by 94 · see citing works
In sickness and in dignity: A philosophical account of the meaning of dignity in health care
Barclay, L. (2016) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2016.06.010 · Cited by 94 · see citing works
Solano, J. P. C., da Silva, A. G., Soares, I. A., Ashmawi, H. A., & Vieira, J. E. (2016) · BMC Palliative Care · doi:10.1186/s12904-016-0139-y · Cited by 92 · see citing works
“Among dying patients, hope is apparently related to concepts of meaning and purpose [14].”
BackgroundPringle, J., Johnston, B. M., & Buchanan, D. (2015) · Palliative Medicine · doi:10.1177/0269216315575681 · Cited by 88 · see citing works
Bovero, A., Sedghi, N. A., Opezzo, M., Botto, R., Pinto, M., Ieraci, V., & Torta, R. (2018) · Psycho-Oncology · doi:10.1002/pon.4884 · Cited by 86 · see citing works
“Existential concerns may represent a strong risk factor for the maintenance of terminally ill patients' well‐being, and several of them are included in Chochinov et al's dignity model.(7) In fact, loss of dignity and existential distress are associated.”
BackgroundMethodTang, S. T., Liu, T., Lai, M., & McCorkle, R. C. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.02.006 · Cited by 85 · see citing works
Julião, M., Oliveira, F., Nunes, B., Carneiro, A. V., & Barbosa, A. (2017) · Palliative & Supportive Care · doi:10.1017/s1478951516001140 · Cited by 86 · see citing works
“DT is based on an empirical model of dignity in the terminally ill (Chochinov et al., 2002).”
MethodLiving in a World without Closure: Reality for Parents who have Experienced the Death of a Child
Woodgate, R. L. (2006) · Journal of Palliative Care · doi:10.1177/082585970602200203 · Cited by 84 · see citing works
“Originally developed specifically for adult patients near the end of life, dignity therapy encourages dying individuals to speak to those issues that matter most (34-36).”
BackgroundEnd-of-life care and outcomes.
Lorenz, K., Lynn, J., Morton, S. C., Dy, S. M., Mularski, R. A., Shugarman, L. R., Sun, V. C.-Y., Wilkinson, A., Maglione, M., & Shekelle, P. (2004) · PubMed Central · Cited by 85 · see citing works
Dignity conserving care at end-of-life: A narrative review
Östlund, U., Brown, H. K., & Johnston, B. M. (2011) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2011.07.010 · Cited by 84 · see citing works
Julião, M., Barbosa, A., Oliveira, F., Nunes, B., & Carneiro, A. V. (2013) · Palliative & Supportive Care · doi:10.1017/s1478951512000892 · Cited by 81 · see citing works
Patients’ perception of dignity in an Italian general hospital: a cross-sectional analysis
Ferri, P., Muzzalupo, J., & Lorenzo, R. D. (2015) · BMC Health Services Research · doi:10.1186/s12913-015-0704-8 · Cited by 80 · see citing works
“to maintain dignity properly even in adverse situations [5-7].”
BackgroundXiao, J., Chow, K. M., Choi, K. C., Ng, M. S. N., Huang, C., Ding, J., & Chan, C. W. H. (2022) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2022.104217 · Cited by 79 · see citing works
Learning from dying patients during their final days: life reflections gleaned from dignity therapy
Hack, T. F., McClement, S., Chochinov, H. M., Cann, B., Hassard, T. H., Kristjanson, L. J., & Harlos, M. (2010) · Palliative Medicine · doi:10.1177/0269216310373164 · Cited by 79 · see citing works
Self-citationSpiritual, Religious, and Existential Aspects of Palliative Care
Okon, T. R. (2005) · Journal of Palliative Medicine · doi:10.1089/jpm.2005.8.392 · Cited by 76 · see citing works
“52 Two novel approaches 166,167 to therapy have been recently described: meaning centered and dignity psychotherapies.”
HALL, S. L., Dodd, R. H., & Higginson, I. J. (2013) · Geriatric Nursing · doi:10.1016/j.gerinurse.2013.10.012 · Cited by 77 · see citing works
The End-of-Life Phase of High-Grade Glioma Patients: Dying With Dignity?
Sizoo, E. M., TAPHOORN, M. J. B., Uitdehaag, B. M. J., Heimans, J. J., Deliëns, L., Reijneveld, J. C., & Pasman, H. R. W. (2013) · The Oncologist · doi:10.1634/theoncologist.2012-0247 · Cited by 75 · see citing works
Dignity therapy: A feasibility study of elders in long-term care
Chochinov, H. M., Cann, B., Cullihall, K., Kristjanson, L., Harlos, M., McClement, S. E., Hack, T. F., & Hassard, T. (2012) · Palliative and Supportive Care · doi:10.1017/s1478951511000538 · Cited by 73 · see citing works
“The intervention is based on an empirically grounded model of dignity (Chochinov et al., 2002) and has proven (Chochinov et al., 2005) effective in reducing end-of-life psychosocial and existential distress.”
BackgroundMethodSelf-citationDignity Therapy Implementation in a Community-Based Hospice Setting
Montross, L. P., Winters, K. D., & Irwin, S. A. (2011) · Journal of Palliative Medicine · doi:10.1089/jpm.2010.0449 · Cited by 72 · see citing works
Dignity in care in the clinical setting
Lin, Y., Watson, R. A., & Tsai, Y. (2012) · Nursing Ethics · doi:10.1177/0969733012458609 · Cited by 72 · see citing works
Self-Perceived Burden to Others: Patient and Family Caregiver Correlates
McPherson, C. J., Wilson, K. G., Lobchuk, M., & Brajtman, S. (2007) · Journal of Palliative Care · doi:10.1177/082585970702300303 · Cited by 72 · see citing works
“(4), factors relevant to exemplary care (5), existential distress (6), and loss of dignity (7).”
BackgroundMurata, H., & Morita, T. (2006) · Palliative & Supportive Care · doi:10.1017/s1478951506060354 · Cited by 72 · see citing works
“Recently, many empirical models, theoretical hypotheses, and clinical intervention studies have been reported in Western societies ~Block, 2001; Kissane et al., 2001; Breitbart, 2002; Chochinov, 2002; Chochinov et al., 2002, 2005; Passik et al., 2004!.”
BackgroundOechsle, K., Wais, M. C., Vehling, S., Bokemeyer, C., & Mehnert, A. (2014) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2013.10.022 · Cited by 71 · see citing works
Wang, C., Chen, J., Wang, Y., Xu, W., Xie, M., Wu, Y., & Hu, R. (2021) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2021.103922 · Cited by 70 · see citing works
Preference of Chinese general public and healthcare providers for a good death
Haishan, H., Liu, H., Tieying, Z., & Xuemei, P. (2014) · Nursing Ethics · doi:10.1177/0969733014524760 · Cited by 69 · see citing works
Sautier, L., Vehling, S., & Mehnert, A. (2013) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2013.02.023 · Cited by 68 · see citing works
Dignity-conserving care: application of research findings to practice
McClement, S., Chochinov, H. M., Hack, T. F., Kristjanson, L. J., & Harlos, M. (2004) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2004.10.4.12794 · Cited by 68 · see citing works
Self-citationPatients' perception of dignity in Iranian healthcare settings: a qualitative content analysis
Ebrahimi, H., Torabizadeh, C., Mohammadi, E., & Valizadeh, S. (2012) · Journal of Medical Ethics · doi:10.1136/medethics-2011-100396 · Cited by 66 · see citing works
Lau, J., Khoo, A. M., Ho, A. H. Y., & Tan, K. (2021) · Psycho-Oncology · doi:10.1002/pon.5666 · Cited by 68 · see citing works
“TAB L E 2 Definitions of psychological resilience in the included studies Study Definition Key terms Chochinov et al. (2002) ‘Resilience or fighting spirit refers to the mental determination that some patients exercise to overcome their illness‐related concerns or to optimise their quality of…”
BackgroundLin, Y., Tsai, Y., & Chen, H. (2011) · Journal of Clinical Nursing · doi:10.1111/j.1365-2702.2010.03499.x · Cited by 65 · see citing works
van Gennip, I. E., Pasman, H. R. W., Oosterveld‐Vlug, M., Willems, D. L., & Onwuteaka-Philipsen, B. D. (2014) · The Journals of Gerontology Series B · doi:10.1093/geronb/gbu137 · Cited by 65 · see citing works
“Such feelings can lead to the conclusion that their lives have become superfluous (Chochinov et al., 2002), sometimes resulting in the desire to terminate life prematurely (Ganzini, Goy, & Dobscha, 2008; Georges, Onwuteaka-Philipsen, van der Heide, van der Wal, & van der Maas, 2006; Jansen-van der Weide, Onwuteaka-Phi…”
Background
- 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
- Venue
- Social Science & Medicine
- Publisher
- Elsevier BV
- Published
- 2002-02
- Volume
- 54
- Issue
- 3
- Pages
- 433-443
- ISSN
- 0277-9536 (ISSN-L)
- 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
- 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 › Medicine › Public Health, Environmental and Occupational Health › 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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