Susan McClement

Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life

PURPOSE This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and 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 post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a post-intervention satisfaction survey. RESULTS Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000). CONCLUSION Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.

Dignity in the terminally ill: a developing empirical model

Despite use of the term dignity in arguments for and against a patients 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.

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

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.

Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial

BACKGROUND Dignity therapy is a unique, individualised, short-term psychotherapy that was developed for patients (and their families) living with life-threatening or life-limiting illness. We investigated whether dignity therapy could mitigate distress or bolster the experience in patients nearing the end of their lives. METHODS Patients (aged ≥18 years) with a terminal prognosis (life expectancy ≤6 months) who were receiving palliative care in a hospital or community setting (hospice or home) in Canada, USA, and Australia were randomly assigned to dignity therapy, client-centred care, or standard palliative care in a 1:1:1 ratio. Randomisation was by use of a computer-generated table of random numbers in blocks of 30. Allocation concealment was by use of opaque sealed envelopes. The primary outcomes--reductions in various dimensions of distress before and after completion of the study--were measured with the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale, Patient Dignity Inventory, Hospital Anxiety and Depression Scale, items from the Structured Interview for Symptoms and Concerns, Quality of Life Scale, and modified Edmonton Symptom Assessment Scale. Secondary outcomes of self-reported end-of-life experiences were assessed in a survey that was undertaken after the completion of the study. Outcomes were assessed by research staff with whom the participant had no previous contact to avoid any possible response bias or contamination. Analyses were done on all patients with available data at baseline and at the end of the study intervention. This study is registered with ClinicalTrials.gov, number NCT00133965. FINDINGS 165 of 441 patients were assigned to dignity therapy, 140 standard palliative care, and 136 client-centred care. 108, 111, and 107 patients, respectively, were analysed. No significant differences were noted in the distress levels before and after completion of the study in the three groups. For the secondary outcomes, patients reported that dignity therapy was significantly more likely than the other two interventions to have been helpful (χ(2)=35·50, df=2; p<0·0001), improve quality of life (χ(2)=14·52; p=0·001), increase sense of dignity (χ(2)=12·66; p=0·002), change how their family saw and appreciated them (χ(2)=33·81; p<0·0001), and be helpful to their family (χ(2)=33·86; p<0·0001). Dignity therapy was significantly better than client-centred care in improving spiritual wellbeing (χ(2)=10·35; p=0·006), and was significantly better than standard palliative care in terms of lessening sadness or depression (χ(2)=9·38; p=0·009); significantly more patients who had received dignity therapy reported that the study group had been satisfactory, compared with those who received standard palliative care (χ(2)=29·58; p<0·0001). INTERPRETATION Although the ability of dignity therapy to mitigate outright distress, such as depression, desire for death or suicidality, has yet to be proven, its benefits in terms of self-reported end-of-life experiences support its clinical application for patients nearing death. FUNDING National Cancer Institute, National Institutes of Health.

The Patient Dignity Inventory: A Novel Way of Measuring Dignity-Related Distress in Palliative Care

Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources of dignity-related distress among patients nearing the end of life. Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the PDI. The 25-items of the PDI derive from a model of dignity in the terminally ill. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the Terminally Ill. Cronbachs coefficient alpha for the PDI was 0.93; the test-retest reliability was r = 0.85. Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress. The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.

Hope in advanced cancer patients

Individuals diagnosed with advanced cancer frequently experience physical and psychological distress. Hope has been identified as an essential resource in the lives of people with cancer, helping them to cope during times of suffering and uncertainty. Therefore, in order to help bolster hope, health care providers require an understanding of its meaning from the perspective of advanced cancer patients and an awareness of those interventions demonstrated empirically to foster hope in this patient population. This paper summarises salient evidence pertaining to hope in advanced cancer patients and their families or informal caregivers. We examine the challenging issue of how to define hope, discuss the issue of measuring hope and review the state of evidence addressing interventions that may enhance or bolster hope in the face of advanced disease.

Measurement of psychological distress in palliative care

Research investigating the psychological distress of palliative care patients has contributed to our understanding of the needs and experiences of individuals approaching death. This paper aims to provide a brief review of such measurement of psychological distress in palliative care, focusing on established psychiatric and psychological research tools, and quantitative research methods. This includes clinical screening and diagnostic assessment instruments used to identify key distress-related symptoms and the presence of common clinical syndromes, such as depression, anxiety, delirium, as well as the broader psychological dimensions of suffering, such as existential concerns, spirituality, hope and demoralisation. There are important considerations in undertaking psychological research in palliative care, such as maintaining a balance between the methods and measurements that will address key research questions, and sensitivity to the range of physical and emotional demands facing individuals at the point of receiving palliative care. The clinical application of psychological and psychiatric research tools and methods can aid the detection of psychological distress, aid the thorough assessment of the psychological dimension of the patients’ illness and care, aid the identification of individuals who would benefit from specific psychotherapeutic or pharmacologic interventions, and the evaluation of response to treatments.

Symptom distress in adult patients with cancer.

Symptom distress in the adult population with cancer is of concern to clinicians who care for these patients. Increased research has been directed toward the development and refinement of symptom distress scales, the identification of determinants of symptom distress, the investigation of symptom distress as a predictor, and the examination of the relationship between quality of life and symptom distress. Findings from this research have increased our understanding of symptom distress in adult patients with cancer. However, a major limitation of work to date has been a lack of consensus related to the definition and measurement of the symptom distress construct. The purpose of this article is to address existing conceptual and methodological challenges inherent in the study of symptom distress, and to make recommendations for further research in this area.

Expert nursing behaviors in care of the dying adult in the intensive care unit

OBJECTIVE To identify expert nursing behaviors in care of the dying adult in the intensive care unit. DESIGN Descriptive, exploratory. SETTING One tertiary care hospital surgical intensive care unit and one community hospital medical-surgical intensive care unit in a western Canadian city. SUBJECTS Ten intensive care nurses nominated as experts in the care of dying adults by their peers. RESULTS Behaviors identified after constant comparative content analysis of transcribed interviews with nurse experts included: responding after death has occurred; responding to the family; responding to anger; responding to colleagues; providing comfort care; and enhancing personal growth. CONCLUSIONS The identification and description of specific nursing interventions in care of the dying are imperative to demonstrate to practicing clinicians that a clearly defined role exists for them in the delivery of terminal care.

Family Presence During Resuscitation: Canadian Critical Care Nurses’ Perspectives

PURPOSE As part of a larger online survey examining the practices and preferences of Canadian critical care nurses regarding family presence during resuscitation (FPDR) of adult family members, the purpose of the study was to explicate salient issues about the practice of FPDR identified by nurses who responded to the qualitative portion of the survey. DESIGN Descriptive, qualitative. METHODS As part of an online survey, participants were given the opportunity to provide qualitative comments about their personal or professional experiences with FPDR. Data analysis was completed using content analysis and constant comparison techniques. FINDINGS Of the 944 nurses contacted electronically, 450 completed the survey, for a response rate of 48%. Of these, 242 opted to share qualitative comments regarding their experiences with FPDR. Four major themes emerged from the data: (a) perceived benefits for family members; (b) perceived risks for family members; (c) perceived benefits for healthcare providers; and (d) perceived risks for healthcare providers. CONCLUSIONS The practice of FPDR impacts both family members and members of the resuscitation team. Nurses weigh these impacts when considering whether or not to bring family members to the bedside. CLINICAL RELEVANCE The results of this study provide information for practicing clinicians, educators, and administrators regarding the decision-making processes nurses use when considerations of bringing family members to the bedside during resuscitative events are evoked.