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
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.
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.
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.
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.
Comment In: Lancet. 2002 Dec 21-28;360(9350):1997-812504390
Comment In: Lancet. 2003 Mar 1;361(9359):78312620760
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.
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.
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).
Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.
Comment In: J Clin Oncol. 2005 Aug 20;23(24):5427-816110001
To elicit detailed descriptions of adolescents' information and support needs in response to their mothers' breast cancer.
Four different outpatient and inpatient oncology settings in western Canada.
31 adolescent children of women in five illness phases.
27 semistructured interviews and two focus groups were conducted. Interviews were audiotaped, transcribed, and analyzed using constant comparison techniques. The Communication Subscale of the McMaster Family Assessment Device also was administered to assess family communication patterns.
Information needs were sources of information, information content, degree of helpfulness, and information timing. Support needs were type, degree of helpfulness, form, and source.
Most of the adolescents reported that their needs were poorly met.
Women with breast cancer have a need for family-focused care. Further research is required to develop interventions that can assist nurses in providing care that meets the needs of adolescent children and other family members of women with breast cancer.
A semistructured measure was developed from early descriptive work by Lipowski to elicit the meaning of breast cancer using eight preset categories: challenge, enemy, punishment, weakness, relief, strategy, irreparable loss, and value. This measure was applied in two studies: a cross-sectional survey of 1012 Canadian women at various points after diagnosis and a follow-up study 3 years later of 205 women from the previous study who were close to the time of diagnosis at the first testing. The majority of the 1012 women chose "challenge" (57.4%) or "value" (27.6%) to describe the meaning of breast cancer, whereas fewer chose the more negative "enemy" (7.8%) or "irreparable loss" (3.9%). At the 3-year follow-up assessment, 78.9% of the women who had indicated positive meaning by their choices of "challenge" or "value" did so again. Verbal descriptions provided by the women were congruent with those reported in previous qualitative studies of meaning in breast cancer with respect to the two most prevalent categories: challenge and value. At follow-up assessment, women who ascribed a negative meaning of illness with choices such as "enemy," "loss," or "punishment" had significantly higher levels of depression and anxiety and poorer quality of life than women who indicated a more positive meaning. The meaning-of-illness measure provides an approach that can be applied in large surveys to detect women who ascribe less positive meaning to the breast cancer experience, women who may be difficult to identify in the context of small, qualitative studies.
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.
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.
To obtain feedback from patients receiving palliative care and their relatives from various ethnic backgrounds about their experiences of the disclosure process and their satisfaction with information sharing during the illness.
A qualitative study with semistructured single interviews.
Perth, Western Australia, and Winnipeg, Manitoba, Canada.
72 participants registered with palliative care: 21 patient-family dyads in Perth and 14 dyads and 2 patients in Winnipeg.
Participants described their experiences in great detail. The analysis indicates that in information sharing the process is as important as the content. The timing, management, and delivery of information and perceived attitude of practitioners were critical to the process. This applied to information interactions at all stages of the illness. Main content areas mentioned related to prognosis and hope. Hope can be conveyed in different ways. Secondary information from various sources is accessed and synthesised with the primary information. All patients, regardless of origin, wanted information about their illness and wanted it fully shared with relatives. Almost all patients requested prognostic information, and all family members respected their wishes. Information was perceived as important for patient-family communication. Information needs of patient and family changed and diverged as illness progressed, and communication between them became less verbally explicit.
Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers.
Cites: Support Care Cancer. 2003 Jan;11(1):21-912527950
Cites: Support Care Cancer. 2002 Jul;10(5):408-1512136224