Harvey Max Chochinov

Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference

A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17-18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.

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.

Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care

Kindness, humanity, and respect—the core values of medical professionalism—are too often being overlooked in the time pressured culture of modern health care, says HarveyChochinov, and the A, B, C, and D of dignity conserving care can reinstate them

Will to live in the terminally ill

BACKGROUND Complex biomedical and psychosocial considerations figure prominently in the debate about euthanasia and assisted suicide. No study to date, however, has examined the extent to which a dying patients will to live fluctuates as death approaches. METHODS This study examined patients with cancer in palliative care. Will to live was measured twice daily throughout the hospital stay on a self-report 100 mm visual analogue scale. This scale was incorporated into the Edmonton symptom assessment system, a series of visual analogue scales measuring pain, nausea, shortness of breath, appetite, drowsiness, depression, sense of well-being, anxiety, and activity. Maximum and median fluctuations in will-to-live ratings, separated by 12 h, 24 h, 7 days, and 30 days, were calculated for each patient. FINDINGS Of 585 patients admitted to palliative care during the study period (November, 1993, to May, 1995), 168 (29%; aged 31-89 years) met criteria of cognitive and physical fitness and agreed to take part. The pattern of median changes in will-to-live score suggested that will to live was stable (median changes <10 mm on 100 mm scale for all time intervals). By contrast, the average maximum changes in will-to-live score were substantial (12 h 33.1 mm, 24 h 35.8 mm, 7 days 48.8 mm, 30 days 68.0 mm). In a series of stepwise regression models carried out at 12 h, 24 h, and 1-4 weeks after admission, the four main predictor variables of will to live were depression, anxiety, shortness of breath, and sense of well-being, with the prominence of these variables changing over time. INTERPRETATION Among dying patients, will to live shows substantial fluctuation, with the explanation for these changes shifting as death approaches.

Depression, Hopelessness, and Suicidal Ideation in the Terminally Ill

This study investigated the mediational hypothesis of hopelessness in predicting suicidal ideation in a group of 196 patients with advanced terminal cancer. Each patient underwent a semistructured interview to assess hopelessness and suicidal ideation, and also completed the Beck Depression Inventory (short form). Hopelessness was correlated more highly with suicidal ideation than was the level of depression. In multiple linear-regression analyses, hopelessness contributed uniquely to the prediction of suicidal ideation when the level of depression was controlled. For health care providers attending to the needs of dying patients, hopelessness appears to be an important clinical marker of suicidal ideation in this vulnerable patient population.

Depression in cancer patients

Clinical depression is a relatively common, and yet frequently overlooked, source of suffering among patients with cancer. All patients who face a life-threatening diagnosis such as cancer experience a normal albeit painful emotional reaction, but a substantial minority will become clinically depressed. This article reviews some basic information that oncology practitioners may find helpful in identifying patients at risk of experiencing a major depression. A brief overview of the epidemiology, diagnostic criteria, screening approaches, and special issues, such as depression in the elderly, high-risk populations, and suicide is also provided.

Dying, Dignity, and New Horizons in Palliative End‐of‐Life Care

Palliative care practitioners are now better able than ever before to ameliorate end‐of‐life symptom distress. What remains less developed, however, is the knowledgebase and skill set necessary to recognize, assess, and compassionately address the psychosocial, existential, and spiritual aspects of the patients dying experience. This review provides an overview of these areas, focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric challenges in end‐of‐life care is complemented with a list of resources for readers wishing to explore this area more extensively. The experience of spiritual or existential suffering toward the end of life is explored, with an examination of the conceptual correlates of suffering. These correlates include: hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. An empirically‐derived model of dignity is described in some detail, with practical examples of diagnostic questions and therapeutic interventions to preserve dignity. Other interventions to reduce existential or spiritual suffering are described and evidence of their efficacy is presented. The author concludes that palliative care must continue to develop compassionate, individually tailored, and effective responses to the mounting vulnerability and increasingly difficult physical, psychosocial, and spiritual challenges facing persons nearing the end of life.