To chart the incidence and course of three types of arm morbidity (lymphedema, pain, and range of motion [ROM] restrictions) in women with breast cancer 6-12 months after surgery and the relationship between arm morbidity and disability.
Longitudinal mixed methods approach.
Four sites across Canada.
347 patients with breast cancer 6-12 months after surgery at first point of data collection.
Incidence rates were calculated for three types of arm morbidity, correlations between arm morbidity and disability were computed, and open-ended survey responses were compiled and reviewed.
Lymphedema, pain, ROM, and arm, shoulder, and hand disabilities.
Almost 12% of participants experienced lymphedema, 39% reported pain, and about 50% had ROM restrictions. Little overlap in the three types of arm morbidity was observed. Pain and ROM restrictions correlated significantly with disability, but most women did not discuss arm morbidity with healthcare professionals.
Pain and ROM restrictions are prevalent 6-12 months after surgery, but lymphedema is not. Pain and ROM restrictions are associated with disability.
Screening for pain and ROM restrictions should be part of breast cancer follow-up care. Left untreated, arm morbidity could have a long-term effect on quality of life. Additional research into the longevity of various arm morbidity symptoms and possible interrelationships also is required.
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
Despite use of the term dignity in arguments for and against a patient's 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.
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
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.