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Dignity Therapy Article

Dignity Therapy Article

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Published by: Dew Nada on Oct 13, 2009
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Dignity Therapy: A Novel PsychotherapeuticIntervention for Patients Near the End of Life
Harvey Max Chochinov, Thomas Hack, Thomas Hassard, Linda J. Kristjanson, Susan McClement,and Mike Harlos
This study examined a novel intervention, dignity therapy, designed to address psychosocialand existential distress among terminally ill patients. Dignity therapy invites patients todiscuss issues that matter most or that they would most want remembered. Sessions aretranscribed and edited, with a returned final version that they can bequeath to a friend orfamily member. The objective of this study was to establish the feasibility of dignity therapyand determine its impact on various measures of psychosocial and existential distress.
Patients and Methods
Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg,Canada, and Perth, Australia, were asked to complete pre- and postintervention measures ofsense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning,desire for death, will to live, and suicidality; and a postintervention satisfaction survey.
Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported aheightened sense of dignity; 68% reported an increased sense of purpose; 67% reporteda heightened sense of meaning; 47% reported an increased will to live; and 81% reported thatit had been or would be of help to their family. Postintervention measures of suffering showedsignificant improvement (
.023) and reduced depressive symptoms (
.05). Finding dignitytherapy helpful to their family correlated with life feeling more meaningful (
.000)and having a sense of purpose (
.000), accompanied by a lessened sense ofsuffering (
.001) and increased will to live (
Dignity therapy shows promise as a novel therapeutic intervention for suffering and distressat the end of life.
J Clin Oncol 23:5520-5525. © 2005 by American Society of Clinical Oncology 
One of the most confounding challengesfacedbyend-of-lifecareprovidersishelpingpatients achieve or maintain a sense of dig-nity. Our prior studies of dignity and end-of-life care have shown a strong associationbetween an undermining of dignity and de-pression,anxiety,desirefordeath,hopeless-ness, feeling of being a burden on others,and overall poorer quality of life.
Yet, dy-ing with dignity is usually only vaguely un-derstood; hence, although the pursuit of dignity frequently underlies various ap-proaches to end-of-life care, its therapeuticimplications are frequently uncertain.Thereismountingevidencethatsuffer-inganddistressaremajorissuesfacingdyingpatients. Some studies suggest that psycho-social and existential issues may be of evengreater concern to patients than pain andphysicalsymptoms.
TheInstituteofMed-icine has identified overall quality of lifeand achieving a sense of spiritual peace and
From the Department of Psychiatry,Family Medicine, Community HealthSciences, and Faculty of Nursing,University of Manitoba; ManitobaPalliative Care Research Unit andPatient and Family Support Services,CancerCare Manitoba; St BonifaceGeneral Hospital, Winnipeg, Manitoba,Canada; and Edith Cowan University,Perth, Australia.Submitted December 15, 2004; acceptedMarch 7, 2005.Supported by the Cancer Council ofWestern Australia (L.J.K.) and grantsfrom the American Foundation forSuicide Prevention and the NationalCancer Institute of Canada, with fund-ing from the Canadian Cancer Society.Dr Chochinov is a Canada Research Chairin palliative care, funded by the CanadianInstitutes for Health Research.This article reports original research;none of the results have beenpublished previously, nor have theyappeared in conference proceedings,abstracts, or reports. The outline ofquestions used for dignity therapy hasappeared in
Journal of the AmericanMedical Association
(Chochinov HM:Dignity-conserving care: A new modelfor palliative care. JAMA 287:2253-2260, 2002).Authors’ disclosures of potential con-flicts of interest are found at the end ofthis article.Address reprint requests to HarveyMax Chochinov, MD, PhD, CancerCareManitoba Room, 3017-675 McDermotAve, Winnipeg, Manitoba, Canada R3E0V9; e-mail: harvey.chochinov@cancercare.mb.ca.© 2005 by American Society of ClinicalOncology0732-183X/05/2324-5520/$20.00DOI: 10.1200/JCO.2005.08.391
AUGUST 20 2005
Copyright © 2005 by the American Society of Clinical Oncology. All rights reserved.Downloaded from jco.ascopubs.org on September 30, 2009 . For personal use only. No other uses without permission.
well-being among the key domains of quality end-of-lifecare. Similarly, patients deem a sense of spiritual peace,relieving burden, and strengthening relationships withloved ones among the most important facets of end-of-lifecare.
Several studies have linked these issues, including aloss of sense of dignity, loss of meaning, and a sense of being a burden on others, with heightened requests for ahastened death.
Clearly, palliative interventions mustreach beyond the realm of pain and symptom manage-ment to be fully responsive to a broad and complex rangeof expressed needs.The purpose of this study was to examine a brief, indi-vidualizedpsychotherapeuticintervention,dignitytherapy,designed to address psychosocial and existential distressamong terminally ill patients. Such distress has often beenlinked to the notion of suffering and described in terms of the challenges that threaten the intactness of a person.
Others have suggested that meaning, or a paucity of mean-ing, defines the essence of existential distress.
Dignity therapy builds on the foundation of this work by engagingpatients in a brief, individualized intervention designed toengenderasenseofmeaningandpurpose,therebyreducingsuffering in patients nearing death.Our empirically based dignity model of palliative careprovidestheframeworkforthisnovelintervention,inform-ing its content and therapeutic tone (Table 1).
To de-crease suffering, enhance quality of life, and bolster a senseof meaning, purpose, and dignity, patients are offered theopportunity to address issues that matter most to them orspeaktothingstheywouldmostwantrememberedasdeathdraws near. An edited transcript of these sessions is re-turned to the patient for them to share with individuals of their choosing. This study was undertaken to establish thefeasibility of dignity therapy and determine its impact onvarious measures of psychosocial and existential distress.
The outline of the dignity-therapy interview guide is based onthemesandsubthemesthatarisefromthedignitymodel(Table2).Therapy sessions are transcribed and edited, and the resulting“generativity document” is returned to patients to bequeath to afriend or family member. Therapeutic sessions, running between30 and 60 minutes, were offered either at the patients’ bedside forthose in hospital or, for outpatients, in their residential setting(home or long-term care facility). A psychiatrist (H.M.C.) andpalliative care nurse (in Winnipeg, Canada) or two palliative carenurses and a psychologist (in Perth, Australia) administered themanualizedprotocol.Beforestartingthestudy,pilotsessionswereconducted to ensure intertherapist consistency in administeringdignity therapy. To ensure protocol integrity, approximately onein four transcripts were selected randomly for review by the prin-cipal investigator (H.M.C.). Although no major breaches of theprotocol were detected, this process enabled minor refinementsand standardization of the interview format and editing processbetween therapists and across study sites.Dignity therapy was offered to all patients meeting entry criteriawhowereregisteredwithpalliativecareservicesinPerthorWinnipeg. In Australia, patients were recruited from two sites,including the Silver Chain Hospice Care Service (Osborne Park,WesternAustralia,Australia;Australia’slargestin-homespecialistpalliative care service) and The Cancer Council Centre for Pallia-tiveCareCottageHospice(ShentonPark,WesternAustralia,Aus-tralia; a 26-bed palliative care unit). In Canada, patients wererecruitedfromtheWinnipegRegionalHealthAuthorityPalliativeCare Program (Winnipeg, Manitoba, Canada). Similar to the
Table 1.
Dignity Themes, Definitions, and Dignity-Therapy Implications
Dignity Theme Denition Dignity-Therapy ImplicationGenerativity The notion that, for some patients, dignity isintertwined with a sense that one’s life hasstood for something or has some influencetranscendent of deathSessions are tape-recorded and transcribed, withan edited transcript or
generativity document
being returned to the patient to bequeath to afriend or family memberContinuity of self Being able to maintain a feeling that one’sessence is intact despite advancing illnessPatients are invited to speak to issues that arefoundational to their sense of personhood orselfRole preservation Being able to maintain a sense of identificationwith one or more previously held rolesPatients are questioned about previous orcurrently held roles that may contribute to theircore identityMaintenance of pride An ability to sustain a sense of positive self-regard Providing opportunities to speak aboutaccomplishments or achievements thatengender a sense of prideHopefulness Hopefulness relates to the ability to nd ormaintain a sense of meaning or purposePatients are invited to engage in a therapeuticprocess intended to instill a sense of meaningand purposeAftermath concerns Worries or fears concerning the burden orchallenges that their death will impose onothersInviting the patient to speak to issues that mightprepare their loved ones for a future withoutthemCare tenor Refers to the attitude and manner with whichothers interact with the patient that may or maynot promote dignityThe tenor of dignity therapy is empathic,nonjudgmental, encouraging, and respectful
Dignity Therapy
Copyright © 2005 by the American Society of Clinical Oncology. All rights reserved.Downloaded from jco.ascopubs.org on September 30, 2009 . For personal use only. No other uses without permission.
Australian site’s program, this program offers a broad range of inpatient and outpatient end-of-life care services.Patient eligibility criteria were as follows: (1) a terminal ill-nessassociatedwithalifeexpectancyof 
6months;(2)minimumageof18years;(3)Englishspeaking;(4)acommitmenttothreetofour contacts over approximately 7 to 10 days; (5) no cognitiveimpairments, based on clinical consensus; and (6) willingness toprovide verbal and written consent. The ethics review boards atboth the University of Manitoba, Winnipeg (Winnipeg, Mani-toba, Canada), and Edith Cowan University (Perth, Western Aus-tralia, Australia) approved this study.Once consent was obtained, patients were asked to completeapsychometricbatterycoveringabroadrangeofphysical,psycho-logical, and existential outcomes to discern possible areas of ther-apeutic influence. Because this was a feasibility study and wewishedtoexaminepossibleareasofinfluenceacrossabroadrangeof outcomes, these were confined to single-item screening instru-ments for depression, dignity, anxiety, suffering, hopefulness, de-sire for death, suicide, and sense of well-being (consisting of aseven-point ordinal scale: 0, not a source of distress; 1, minimaldistress; 2, mild distress; 3, moderate distress; 4, strong distress; 5,severedistress;6,extremedistress).
haveshownthatsuchscreeningapproachesyieldexcellentinter-rater(0.92to0.97)and test-retest (0.50 to 0.90) reliability and correlated highly withtheir visual analog equivalent (0.78 to 90).
The protocol alsocontained a two-item quality-of-life instrument
and a revisedEdmonton Symptom Assessment Scale, which included a will-to-live visual analog scale.
Once patients completed the baseline psychometrics, partic-ipants were reminded that the following session would consist of being asked to speak about things that mattered most to them, onaudiotape, including things that they would want to say and beknown to the people closest to them. They were provided thestandard framework of questions (Table 2), thus giving themampletimetoreflectonandshapetheireventualresponses.Atimefor the tape-recorded session was then scheduled at their earliestconvenience, usually within 1 to 3 days.The taped sessions began with the question, “Tell me a littleabout your life history, particularly the parts that you either re-member most or think were most important”? The questionframework provided a flexible guide for the therapist to shape theinterview, based on the level of interest and elicited response. Thetherapist followed the patients’ cues, helping them to structureand organize their thoughts (eg, by asking logical questions basedon time sequences or how events were causally related to eachother; facilitated disclosure of thoughts, feelings, and memories).Similarly,providingencouragementandaskingfordetailsenabledeven patients particularly close to death to participate (eg, “Imag-inethatyouandIarelookingatapicturebookofyourlife;tellmein as much detail as you can about some of the pictures we mightsee”). Most patients were able to complete this process with onerecorded session; occasionally a second (and, rarely, a third) ses-sion was required to complete the generativity document.Once the taped session was completed, over the course of thenext 2 to 3 days, the patient’s recorded dialogue was reshaped intoa narrative. The interview was first transcribed verbatim. Thistranscript then underwent a formatted editing process, including(1) basic clarifications (eliminating colloquialisms, nonstarters,and portions of the transcript not related to generativity material[eg, needing to change a colostomy bag, interruptions that oc-curred during the course of the session such as visitors, careproviders, and so on]); (2) chronological corrections (it was com-mon for patients to say things out of sequence or present theirthoughtsinanillogicalorder);(3)taggingandeditinganycontentthat might inflict significant harm or suffering on the transcript’srecipient(s) (these were always discussed and reviewed with thepatient); and (4) finding a statement or passage within the tran-script that provided an appropriate ending (given that this was agenerativity, legacy-making exercise, the ending needed to be ap-propriate to the patient’s overall message [eg, “Life has beengood”; “I wish my family all God’s blessings”; “I wouldn’t havechanged a thing”]), resulting in manuscripts that patients wouldfeel captured their intent and achieved the appropriate final tone.Once the edited transcript was completed, another sessionwas arranged for the therapist to read the document in its entirety to the patient; this was often emotionally evocative, because pa-tients heard their words, thoughts, and feelings spoken aloud.Patients were invited to make any editorial suggestions, includingidentifying errors of omission or commission. In some instances,these errors were minor in nature (eg, an elderly immigrant whostated “Not Bavaria. . .but Bulgaria!”); in other instances, the er-rors were major (eg, a middle-aged woman who felt she needed tosay more about one of her two children). Depending on thepatients’ preference or health status, editorial changes were ad-dressedwithinthetranscript-reviewsessionor,occasionally,attheearliest possible follow-up time. Throughout the protocol, anethos of immediacy and short time frames acknowledged thepatients’ limited life expectancy and reinforced the importance of what the patient needed to say and the significance of creating thegenerativity document. At the conclusion of the intervention,
Table 2.
Dignity Psychotherapy Question ProtocolTell me a little about your life history; particularly the parts that you either remember most or think are the most important? When did you feel mostalive?Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember?What are the most important roles you have played in life (family roles, vocational roles, community-service roles, etc)? Why were they so important toyou, and what do you think you accomplished in those roles?What are your most important accomplishments, and what do you feel most proud of?Are there particular things that you feel still need to be said to your loved ones or things that you would want to take the time to say once again?What are your hopes and dreams for your loved ones?What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your(son, daughter, husband, wife, parents, other[s])?Are there words or perhaps even instructions that you would like to offer your family to help prepare them for the future?In creating this permanent record, are there other things that you would like included?
Chochinov et al
Copyright © 2005 by the American Society of Clinical Oncology. All rights reserved.Downloaded from jco.ascopubs.org on September 30, 2009 . For personal use only. No other uses without permission.

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