Dignity in the terminally ill: a developing empirical model

Chochinov, Harvey Max; Hack, Thomas F.; McClement, Susan; Kristjanson, Linda J.; Harlos, Mike

doi:10.1016/s0277-9536(01)00084-3

Cited by 589 publications

(697 citation statements)

References 30 publications

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“…4,23 To our knowledge, less is known regarding the coping strategies of patients in the terminal phase of their illness. However, the ways of coping with a terminal prognosis that are outlined in Table 3 are similar to some of the "dignity-conserving practices" reported by Chochinov et al 24 In their study, 50 patients with advanced terminal cancer from a PC unit in Canada were interviewed regarding how they coped with their illness and their perceptions of dignity. "Living in the moment" and "maintaining normalcy" were among the subthemes identified.…”

Section: Discussionmentioning

confidence: 57%

Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers

Clayton

Butow

Arnold

et al. 2005

Cancer

243

266

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BACKGROUNDIt is challenging for clinicians to foster coping and allow hope when discussing prognosis and end‐of‐life (EOL) issues with terminally ill cancer patients and their caregivers. To the authors' knowledge, little research evidence is currently available to guide clinical practice.METHODSThe authors conducted focus groups and individual interviews with 19 patients with far advanced cancer and 24 caregivers from 3 palliative care (PC) services in Sydney, and 22 PC health professionals (HPs) from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Additional focus groups or individual interviews were conducted until no additional topics were raised. The participants' narratives were analyzed using qualitative methodology.RESULTSAll participant groups believed there were ways of fostering coping and nurturing hope when discussing prognosis and EOL issues. Themes identified from the transcripts regarding ways of helping patients with a limited life expectancy to cope were: 1) emphasize what can be done (namely: a) control of physical symptoms; b) emotional support, care, and dignity; and c) practical support), 2) explore realistic goals, and 3) discuss day‐to‐day living. Two additional themes were identified regarding ways of fostering hope: the balance between truth telling and nurturing hope, and the spectrum of hope. All these themes were raised by the patients, caregivers, and HPs. However, there were some differences of opinion within the three participant groups.CONCLUSIONSThe results of the current study demonstrated that most participants believed there were ways of fostering coping and maintaining hope and that HPs have a role in facilitating this with terminally ill cancer patients and their caregivers. Cancer 2005. © 2005 American Cancer Society.

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Section: Discussionmentioning

confidence: 57%

Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers

Clayton

Butow

Arnold

et al. 2005

Cancer

243

266

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“…11,12 The construct of hope among the dying connotes having a sense of meaning and purpose. 13,14 It would appear that losing one's sense of meaning and purpose-experiencing life as having become redundant or futile-is an important existential underpinning of the loss of will to live among the dying. The second variable to enter the model, burden to others, has been reported in several studies examining the issue of physician-assisted suicide.…”

Section: Discussionmentioning

confidence: 99%

“…15 Finally, dignity, the third model variable, has been shown to be a complex construct, with various dimensions and layers of meaning. 6,13,14 Like burden to others, dignity has frequently been invoked in death-hastening discussions. It has been shown to correlate with appearance or the perception of how one perceives oneself to be seen.…”

Section: Discussionmentioning

confidence: 99%

Understanding the Will to Live in Patients Nearing Death

et al. 2005

Self Cite

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“…[11][12][13][14][15][16] Chochinov and colleagues performed a qualitative study focusing on how dying cancer patients understand and define dignity, and developed an empirical model of dignity to understand how patients face an advancing terminal illness. 17 From the themes and subthemes of this model, a list of 22 items concerning symptoms and experiences that influence the sense of dignity of terminally ill patients was developed. 18 These 22 items formed the PDI prototype which was later revised into the 25-item Patient Dignity Inventory (PDI).…”

Section: Introductionmentioning

confidence: 99%

Personal Dignity in the Terminally Ill from the Perspective of Caregivers: A Survey among Trained Volunteers and Physicians

Albers

Vet

Pasman

et al. 2013

Journal of Palliative Medicine

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Background: Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. Objective: The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. Design: The study is a survey questionnaire study. Subjects: Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n = 236) and end-of-life consultants (SCEN physicians; n = 427). Measurements: Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life. Results: Overall, volunteers indicated items more frequently as influential to dignity and as problematic in maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items. Conclusions: It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity.

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Dignity in the terminally ill: a developing empirical model

Cited by 589 publications

References 30 publications

Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers

Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers

Understanding the Will to Live in Patients Nearing Death

Personal Dignity in the Terminally Ill from the Perspective of Caregivers: A Survey among Trained Volunteers and Physicians

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