Biomedical subjects

Mike Harlos

Publications and source records attributed to Mike Harlos.

12 recordsLinked to original sources

PubMed2006

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.

Adaptation, Psychological↗

PubMed2006

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.

Aged, 80 and over↗

PubMed2005

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.

Adaptation, Psychological↗

PubMed2004

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.

Aged↗

PubMed2004

Dignity-conserving care: application of research findings to practice.

A central tenet of palliative care is to help people die with "dignity". The widespread use of this term presupposes that this construct is well understood from the perspective of the terminally ill, and that the factors that bolster or erode dignity are known. However, the paucity of research related to these issues suggests otherwise. Over the past 5 years, this research team, headed by Dr Chochinov, has undertaken a programme of research aimed at explicating what dignity means to those who are terminally ill, and identifying those factors that support and undermine dignity in this patient population. This article will provide a synopsis of that work, with an emphasis on the application of research findings for practice.

Human Rights↗

PubMed2004

Family responses to declining intake and weight loss in a terminally ill relative. Part 1: fighting back.

We recently completed a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (1). That work generated important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit. An overview of the inductively derived model that emerged from that work has been reported elsewhere (2). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of "fighting back: it's best to eat." The strategies family members use when fighting back, and the consequences of these strategies for patients, family members, and health care providers are reported. Implications for practice and research are provided.

Adult↗

PubMed2004

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.

Attitude to Death↗

PubMed2002

Dignity in the terminally ill: a developing empirical model.

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.

Activities of Daily Living↗

PubMed2002

Palliative sedation therapy: a review of definitions and usage.

Palliative care clinicians are faced with the challenge of managing a multitude of complex symptom combinations in patients for whom they care. Although many symptoms respond favourably to established protocols, others may remain refractory to such intervention. It is within the context of trying to manage such symptoms that the issue of palliative sedation therapy arises. The use of sedation in such circumstances is one that has prompted considerable debate in the palliative care literature. Discourse has been hampered, however, by a lack of consensus regarding the meaning and intent of palliative sedation therapy, when it should be used clinically and how it is to be achieved pharmacologically. There is a dearth of research examining the meanings ascribed to its use from the perspective of patients, families, and health-care providers. This article will provide an overview of these identified issues, and provide suggestions for ways in which palliative sedation therapy might further be examined and understood.

Procedural Sedation↗

PubMed2002

Developing palliative care surveillance in Canada: results of a pilot study.

OBJECTIVE: A pilot study compiled data from six palliative care centres across Canada to assess the feasibility of developing a national surveillance system. METHODS: Data provided for the three-year period between 1993-1997 were combined into a comparative minimum data set. Analyses included 6,369 care episodes from five centres, plus 948 patients from one centre. RESULTS: Care was provided in various settings including acute care wards, dedicated palliative care units, tertiary care, chronic care, and at home. Palliative care patients comprised equal numbers of men and women, with a median age of 69 years; 92% had cancer diagnoses. Median length of stay (LOS) for each care episode was 13 days, increasing to 40-43 days for a patient's entire time in care. LOS varied greatly, by care setting, from seven days (dedicated unit), to 19 days (tertiary unit), 37 days (home), and 54 days (chronic care). Our findings are similar to those reported from national surveys in Australia and the United Kingdom. SUMMARY: This study generated useful baseline data and identified key issues requiring resolution before establishing a national surveillance system, including the need to track patients across care settings.

Adolescent↗

PubMedDate not supplied

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.

Activities of Daily Living↗

PubMedDate not supplied

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.

Activities of Daily Living↗