Learning from dying patients during their final days: life reflections gleaned from dignity therapy.

Dignity therapy is a novel therapeutic approach designed to decrease suffering, enhance quality of life and bolster a sense of dignity for patients approaching death. The benefits of dignity therapy were previously documented in a sample of 100 terminally ill patients. One of the products of dignity therapy is a transcript of the edited therapy session(s). In this qualitative study, 50 of the 100 (17 from Winnipeg, Manitoba, Canada, and 33 from Perth, Australia) dignity therapy transcripts were randomly drawn, and independently coded and analysed by three investigators using a grounded theory approach. The transcripts revealed that dignity therapy serves to provide a safe, therapeutic environment for patients to review the most meaningful aspects of their lives in such a manner that their core values become apparent. The most common values expressed by the patients included 'Family', 'Pleasure', 'Caring', 'A Sense of Accomplishment', 'True Friendship', and 'Rich Experience'. Exemplars of each of these values illustrate the pervasive, defining role of values in our lives. The findings are discussed in terms of values theory, the role of dignity therapy, and consideration of values clarification in clinicians' efforts to enhance the dignity of terminally ill patients.

The landscape of distress in the terminally ill.

Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. Although prior studies have examined the prevalence of symptom distress among patients nearing death, these studies have tended to largely focus on physical and, to a lesser extent, psychological challenges. The aim of this study was to use the Patient Dignity Inventory (PDI), a novel, reliable, and validated measure of end-of-life distress, to describe a broad landscape of distress in patients who are terminally ill. The PDI, a 25-item self-report, was administered to 253 patients receiving palliative care. Each PDI item is rated by patients to indicate the degree to which they experience various kinds of end-of-life distress. Palliative care patients reported an average of 5.74 problems (standard deviation, 5.49; range, 0-24), including physical, psychological, existential, and spiritual challenges. Being an inpatient, being educated, and having a partner were associated with certain kinds of end-of-life problems, particularly existential distress. Spirituality, especially its existential or "sense of meaning and purpose" dimension, was associated with less distress for terminally ill patients. A better appreciation for the nature of distress is a critical step toward a fuller understanding of the challenges facing the terminally ill. A clear articulation of the landscape of distress, including insight regarding those who are most at risk, should pave the way toward more effective, dignity-conserving end-of-life care.

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. Cronbach's 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.

Dignity therapy: family member perspectives.

PURPOSE: Dignity Therapy is a novel therapeutic intervention designed to address psychosocial and existential distress among the terminally ill. This brief, individualized approach to end-of-life care invites patients to discuss issues that are most important to them and to articulate things they would most want remembered as death draws near. These discussions and recollections are recorded, transcribed, and edited into a generativity document, which are usually given to family or loved ones. While the marked benefits of Dignity Therapy on patients' psychosocial and existential distress have been reported elsewhere, this paper presents data on bereft family members' perspectives regarding the impact of dignity therapy on patients and themselves. SUBJECTS AND METHODS: Sixty family members of deceased terminally ill patients who previously took part in Dignity Therapy completed a questionnaire to elicit feedback about the impact of Dignity Therapy on both the dying patient and themselves. RESULTS: Ninety-five percent of participants reported that Dignity Therapy helped the patient; 78% reported that it heightened the patient's sense of dignity; 72% reported that it heightened the patient's sense of purpose; 65% reported that it helped the patient prepare for death; 65% reported that it was as important as any other aspect of the patient's care; and 43% reported that Dignity Therapy reduced the patient's suffering. Regarding family members, 78% reported that the generativity document helped them during their time of grief; 77% reported that the document would continue to be a source of comfort for their families and themselves; and 95% reported they would recommend Dignity Therapy to other patients of family members confronting a terminal illness. CONCLUSION: Family members endorse Dignity Therapy as a therapeutic intervention that moderates their bereavement experiences and lessens suffering and distress in terminally ill relatives.

Burden to others and the terminally ill.

Studies of patients who are terminally ill consistently identify strong associations between "sense of burden to others" and marked end-of-life distress. However, little research has addressed the issue of burden to others among patients nearing death. The aim of this study was to carefully examine "burden to others" and clarify its relationship with various psychosocial, physical, and existential issues arising in patients who are terminally ill. A cohort of 211 patients with end-stage cancer was assessed, using an assortment of validated psychometrics to document psychosocial, physical, and existential aspects of their end-of-life experience. This included an assessment of their sense of "burden to others." Forty percent of participants indicated a negligible sense of burden to others, scoring within the lowest quarter on an ordinal measure of "burden to others;" 25% scored within the second lowest quarter; 12% within the third quarter; and 23% within the highest or most severe range. The most highly correlated variables with "sense of burden to others" included depression (r=0.460; df=201, P<0.0001), hopelessness (r=0.420; df=199, P<0.0001), and outlook (r=0.362; df=200, P<0.0001). Four variables emerged in a multiple regression analysis predicting burden to others, including hopelessness, current quality of life, depression, and level of fatigue [R(2) adj=0.32, F(6,174)=13.76, P<0.0001]. There was no association between sense of burden to others and actual degree of physical dependency. Feeling a sense of burden to others is common among dying patients. Although 40% of the sample reported little in the way of sense of burden to others, the remainder endorsed higher degrees of burden-related distress, with 23% scoring within the most severe range. The lack of association between "sense of burden to others" and the degree of physical dependency suggests this perception is largely mediated through psychological and existential considerations. Strategies that target meaning and purpose, depression, and level of fatigue could lessen this source of distress and enhance quality, dignity-conserving care.

The fibromyalgia bladder index.

The aim of this study was to determine whether an existing outcome measure, the Interstitial Cystitis Symptom and Problem Index (ICSI/ICPI), is a valid, reliable, and clinically relevant instrument to assess the sensory urinary symptoms in women with fibromyalgia syndrome (FM). Ninety women with American College of Rheumatology 90 FM and who had at least two sensory bladder symptoms participated in the study. All underwent urological screening to exclude lower urinary tract pathology. All participants completed the following: ICSI/ICPI, Fibromyalgia Impact Questionnaire (FIQ), Medical Outcome Study Short Form 36, King's Health Questionnaire (KHQ), and Vulval Symptom Assessment Scale. Assessment was made for internal consistency reliability, test-retest reliability, and concurrent validity. Factor analysis was used to assess the internal structure of the scale. Factor analysis displayed two separate components of symptom and problem combinations as distinct from the original ICSI/ICPI developed for the interstitial cystitis population. The eight items of the index configured differently and formed two subscales of a newly developed Fibromyalgia Bladder Index. The two subscales of this index include the Bladder Urgency and Pain Subscale and the Bladder Frequency and Nocturia Subscale. This index has high internal consistency reliability (Cronbach's alpha coefficient of 0.81), test-retest reliability showing intraclass correlation of 0.85, and high concurrent validity through correlations between the Fibromyalgia Bladder Index and the KHQ (0.735, p = 0.000) and the FIQ (0.433, p = 0.000). This more specific configuration of the ICSI/ICPI better reflects FM bladder symptomatology. The Fibromyalgia Bladder Index is a validated FM-specific instrument that captures information about the sensory bladder symptoms and their impact in this fibromyalgia population. This instrument should allow for better understanding and management of this important fibromyalgia-associated problem.

Early detection and quantification of murine melanoma bone metastases with magnetic resonance imaging.

OBJECTIVE: Bone metastases occur in approximately 80% of patients with advanced cancer and cause significant morbidity. There are currently no established means by which to identify the early growth of micro-metastatic cells or their effects on bone at a time when curative therapy might be initiated. We postulated that high-resolution magnetic resonance imaging (MRI) could detect and quantify the growth and destructive effects of bone micrometastases. DESIGN: Using a mouse model for metastasis of malignant melanoma, we have examined the ability of MRI to quantify cortical bone destruction and the percentage of the medullary cavity occupied by tumour, trabecular bone, and marrow. The results from MRI were compared to histomorphometry (the reference standard) and to radiographs. RESULTS: In vivo gradient-echo and spin-echo MRI demonstrated that metastatic melanoma replaced the marrow space but that the cortical bone integrity was preserved (P < or = 0.001). The smallest detectable micrometastasis had an area of 0.323 mm(2). In contrast, we observed no trends after quantifying the radiograph data. CONCLUSION: These approaches delineated the limits of MRI in its ability to quantify tumour burden and the effect on bone in this model. Given the increasing use of MRI as a non-invasive clinical diagnostic method, the present findings may be applicable in detecting bone metastases in the clinical setting at an early and potentially treatable stage.

Personality, neuroticism, and coping towards the end of life.

The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.

Dignity in the terminally ill: revisited.

BACKGROUND: Several studies have been conducted examining the notion of dignity and how it is understood and experienced by people as they approach death. OBJECTIVE: The purpose of this study was to use a quantitative approach to validate the Dignity Model, originally based on qualitative data. DESIGN: Themes and subthemes from the Dignity Model were used to devise 22 items; patients were asked the extent to which they believed these specific issues were or could be related to their sense of dignity. RESULTS: Of 211 patients receiving palliative care, "not being treated with respect or understanding" (87.1%) and "feeling a burden to others" (87.1%) were the issues most identified as having an influence on their sense of dignity. All but 1 of the 22 items were endorsed by more that half of the patients; 16 items were endorsed by more than 70% of the patients. Demographic variables such as gender, age, education, and religious affiliation had an influence on what items patients ascribed to their sense of dignity. "Feeling life no longer had meaning or purpose" was the only variable to enter a logistic regression model predicting overall sense of dignity. CONCLUSIONS: This study provides further evidence supporting the validity of the Dignity Model. Items contained within this model provide a broad and inclusive range of issues and concerns that may influence a dying patient's sense of dignity. Sensitivity to these issues will draw care providers closer to being able to provide comprehensive, dignity conserving care.

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.

The relation between perceived need for mental health treatment, DSM diagnosis, and quality of life: a Canadian population-based survey.

OBJECTIVES: Prevalence estimates of mental disorders were designed to provide an indirect estimate of the need for mental health services in the community. However, recent studies have demonstrated that meeting criteria for a DSM-based disorder does not necessarily equate with need for treatment. The current investigation examined the relation between self-perceived need for mental health treatment and DSM diagnosis, with respect to quality of life (QoL) and suicidal ideation. METHODS: Data came from an Ontario population-based sample of 8116 residents (aged 15 to 64 years). The University of Michigan Composite International Diagnostic Interview was used to diagnose mood, anxiety, substance use, and bulimia disorder according to DSM-III-R criteria. We categorized past-year help seeking for emotional symptoms and (or) perceiving a need for treatment without seeking care as self-perceived need for treatment. We used a range of variables to measure QoL: self-perception of mental health status, a validated instrument that measured well-being, and restriction of activities (current, past 30 days, and long-term). RESULTS: Independent of subjects' meeting criteria for a DSM-III-R diagnosis, self-perceived need for treatment was significantly associated with poor QoL (on all measures) and past-year suicidal ideation. CONCLUSIONS: Self-perceived need for mental health treatment, in addition to DSM diagnosis, may provide valuable information for estimating the number of people in the population who need mental health services. The relation between self-perceived need for treatment and objective measures of treatment need requires future study.

Understanding the will to live in patients nearing death.

This study examined concurrent influences on the will to live in 189 patients with end-stage cancer The authors found significant correlations between the will to live and existential, psychological, social, and, to a lesser degree, physical sources of distress. Existential variables proved to have the most influence, with hopelessness, burden to others, and dignity entering into the final model. Health care providers must learn to appreciate the importance of existential issues and their ability to influence the will to live among patients nearing death.

Dignity and psychotherapeutic considerations in end-of-life care.

The basic tenets of palliative care are frequently subsumed under the goal of helping patients to die with dignity. Our research group has studied the issue of dignity, with dying patients serving as the primary informants. This paper reviews some of our findings, including an overview of the Dignity Model that derives from our empirical work. Furthermore, this paper summarizes various psychotherapeutic approaches which have been considered for this vulnerable patient population. Finally, we provide the rationale based on the Dignity Model for a psychotherapeutic intervention we have coined Dignity Therapy. This brief, individualized therapeutic approach has been informed by our dignity work, and specifically designed for application in patients nearing death.

Defining dignity in terminally ill cancer patients: a factor-analytic approach.

The construct of 'dignity' is frequently raised in discussions about quality end of life care for terminal cancer patients, and is invoked by parties on both sides of the euthanasia debate. Lacking in this general debate has been an empirical explication of 'dignity' from the viewpoint of cancer patients themselves. The purpose of the present study was to use factor-analytic and regression methods to analyze dignity data gathered from 213 cancer patients having less than 6 months to live. Patients rated their sense of dignity, and completed measures of symptom distress and psychological well-being. The results showed that although the majority of patients had an intact sense of dignity, there were 99 (46%) patients who reported at least some, or occasional loss of dignity, and 16 (7.5%) patients who indicated that loss of dignity was a significant problem. The exploratory factor analysis yielded six primary factors: (1) Pain; (2) Intimate Dependency; (3) Hopelessness/Depression; (4) Informal Support Network; (5) Formal Support Network; and (6) Quality of Life. Subsequent regression analyses of modifiable factors produced a final two-factor (Hopelessness/Depression and Intimate Dependency) model of statistical significance. These results provide empirical support for the dignity model, and suggest that the provision of end of life care should include methods for treating depression, fostering hope, and facilitating functional independence.

A comparison of thyroxine- and polyamine-mediated enhancement of rat facial nerve regeneration.

Thyroid hormones and spermidine, a motor neuron trophic polyamine (PA), have been shown to enhance peripheral motor nerve regeneration; however, the mechanism by which these treatment modalities exert their effect is unknown. Similarities in treatment outcome suggest that these molecules may be working via a common mechanism. Such an explanation is plausible since thyroid hormone is a potent inducer of ornithine decarboxylase (ODC), which is the rate-limiting enzyme involved in polyamine synthesis. This study was designed to morphologically evaluate the effects of exogenous thyroxine and spermidine on the regeneration of the rat facial nerve. Myelinated fiber density, axonal size, and degree of myelination were assayed by light and electron microscopy 21 days following facial nerve crush. Strikingly, the two treatment modalities had identical effects on all parameters tested. Each significantly enhanced the density of myelinated axons in regenerating nerves relative to the vehicle control. In addition, relative to the control treatment, both thyroxine and spermidine significantly increased the cross-sectional area of regenerating axons (P < 0.05). Interestingly, neither of the drug treatments had any effect on remyelination at the position where this parameter was analyzed. The concurrent administration of both thyroxine and spermidine did not synergistically enhance motor neuron regeneration. These data support the hypothesis that thyroxine and spermidine enhance neural regeneration by a common mechanism.

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.

Normal murine bone morphometry: a comparison of magnetic resonance microscopy with micro X-ray and histology.

OBJECTIVE: The authors have devised a means to assess subtle changes in the structure of bone using magnetic resonance (MR) microscopy. MR microscopy was compared with micro X-ray and histology to analyze the structure of normal bone. DESIGN: Femurs of C57Bl/6 mice were examined ex vivo using differently orientated slices and pulse sequences on both a 9.4 and 11.7 T MR scanner, followed by micro X-ray and histology. A thresholding analysis technique was applied to MR images, to generate contour lines delineating the boundaries between bone and marrow. RESULTS: By MR microscopy, optimal correlation with histological "gold standards" was obtained using a longitudinal sectional versus a cross-sectional slice profile, a short echo time gradient-echo sequence versus a long echo time spin-echo sequence, and a higher field strength, 11.7 T versus 9.4 T. Gradient-echo images at 11.7 T were acquired with a maximum in-plane resolution of 35 microm. CONCLUSION: Our results demonstrate that the percent area of marrow increases and percent area of trabecular bone and cortical bone thickness decreases on moving from the epiphyseal growth plate to the diaphysis. These changes observed with MR microscopy correlate with the histological data, but did not correlate with micro X-ray data, which showed no trends. Our quantitative evaluation using MR microscopy was found to be an effective means to visualize the normal variation in bone microanatomy compared with a histological "gold standard", and was a superior means of quantification in comparison with micro X-ray.