Harvey Chochinov
University of Manitoba, Medicine, Faculty Member
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... MD, PhD, Uni-versity of Manitoba, 771 Bannatyne Avenue, Winnipeg, MB, Canada R3E 3N4; telephone: (204) 787-3380; fax: (204) 787-4879; e-mail: harvey.chochinov@cancercare.mb. ca ... Are the symptoms of cancer and cancer treatment due... more
... MD, PhD, Uni-versity of Manitoba, 771 Bannatyne Avenue, Winnipeg, MB, Canada R3E 3N4; telephone: (204) 787-3380; fax: (204) 787-4879; e-mail: harvey.chochinov@cancercare.mb. ca ... Are the symptoms of cancer and cancer treatment due to a shard biologic mechanism? ...
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Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our... more
Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our understanding of how people cope with death, both on the part of the terminally ill patients that face death and as the clinicians who care for these patients. Now, 50 years later, a substantial and ever-growing body of research has identified “best practices” for end of life care and provides confirmation and support for many of the therapeutic practices originally recommended by Dr. Kübler-Ross. This paper reviews the empirical study of psychological well-being and distress at the end of life. Specifically, we review what has been learned from studies of patient desire for hastened death and the early debates around physician assisted suicide, as well as demonstrating how these studies, informed by existential principles, have led to the development of manualized psychotherapies for patients with advanced disease. The ultimate goal of these interventions has been to attenuate suffering and help terminally ill patients and their families maintain a sense of dignity, meaning, and peace as they approach the end of life. Two well-established, empirically supported psychotherapies for patients at the end of life, Dignity Therapy and Meaning Centered Psychotherapy are reviewed in detail.
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This article represents the contributions of the panel on "Neuropsychiatric Syndromes and Psychological Symptoms" of the National Cancer Institute of Canada Workshop on Symptom Control and Supportive Care in Patients... more
This article represents the contributions of the panel on "Neuropsychiatric Syndromes and Psychological Symptoms" of the National Cancer Institute of Canada Workshop on Symptom Control and Supportive Care in Patients with Advanced Cancer. The panel's presentations focused on mood disorders and cognitive disorders, and described the current state of knowledge regarding prevalence, assessment, and intervention. Recommendations for future research are presented based on a consensus of the panel as to the need to fill glaring gaps in our current state of knowledge, and a desire to improve the quality of research in this area of palliative medicine. Recommendations for future research on neuropsychiatric symptoms and syndromes in palliative care include (1) adoption of uniform terminology (taxonomy of disorders) and diagnostic classification systems, (2) utilization of existing validated tools and measures in prevalence and intervention research, (3) development of new tools and measures that are more applicable and relevant to the palliative care setting, (4) encouragement for studies of the prevalence of neuropsychiatric symptoms and syndromes, (5) promotion of intervention studies utilizing pharmacologic and nonpharmacologic treatments for depressive disorders and cognitive disorders in advanced cancer patients, and (6) expansion of the focus of such research to other neuropsychiatric disorders (for example, anxiety disorders, posttraumatic stress disorders, and sleep disorders), symptoms (fatigue and tension) and related issues (suicidal ideation and desire for hastened death).
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Pain, Depression, Palliative Care, Medicine, Anxiety, and 15 moreHumans, Posttraumatic stress disorder, Depressive Disorder, Mental Disorders, Mood Disorders, Neoplasms, Cancer Patient, Intervention study, ANXIETY, National Cancer Institute, Anxiety Disorder, Mood Disorder, Nervous System Diseases, Cognition disorders, and Medical and Health Sciences
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Psychiatry and Medicine
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ObjectiveDesire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC)... more
ObjectiveDesire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit.MethodRetrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020.ResultsOf the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% ...
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Background There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: “What... more
Background There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: “What are healthcare providers’ perspectives on training current and future HCPs in compassion?” Methods Fifty-seven HCPs working in palliative care participated in this study, beginning with focus groups with frontline HCPs (n = 35), followed by one-on-one interviews with HCPs who were considered by their peers to be skilled in providing compassion (n = 15, three of whom also participated in the initial focus groups), and end of study focus groups with study participants (n = 5) and knowledge users (n = 10). Results Study participants largely agreed that compassionate behaviours can be taught, and these behaviours are distinct from the emotional response of compassion. They noted that while learners can develop greater compassion through training, their ab...
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The meaning and role of palliative and spiritual care have evolved over the last decades, along with the dramatically changing clinical picture of AIDS. Although advances in antiretroviral therapy and medical interventions have allowed... more
The meaning and role of palliative and spiritual care have evolved over the last decades, along with the dramatically changing clinical picture of AIDS. Although advances in antiretroviral therapy and medical interventions have allowed persons with HIV/AIDS and access to care to live longer and healthier lives, many persons in the United States and throughout the world continue to die of AIDS. There is an increased need for a comprehensive, multidisciplinary approach to care including psychosocial and family support. Curative, palliative, and spiritual care should be integrated, without dichotomizing curative and palliative approaches, in order to meet the challenges of AIDS throughout the course of illness. This chapter reviews basic concepts of palliative and spiritual care, as well as specific challenges facing clinicians involved in HIV palliative care. Finally, issues such as bereavement, demoralization, dignity, meaning, cultural sensitivity, doctor–patient communication, and ...
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ABSTRACT Purpose: Intimate care procedures, such as bathing and toileting, are often regarded as simple, humble tasks. However, the provision of such care transforms a very private, personal activity into a social process. Understanding... more
ABSTRACT Purpose: Intimate care procedures, such as bathing and toileting, are often regarded as simple, humble tasks. However, the provision of such care transforms a very private, personal activity into a social process. Understanding this complex process and the psychological impact it has on those providing and receiving care is critical in order to mitigate potential distress. The purpose of this study to examine the experience of delivering and receiving intimate personal care in the NH. Methods: A focused ethnographic approach with participant observation, semi-structured interviews, focus groups and drop-in sessions, document review, and field notes. Data were analysed using constant comparative analysis. Results: Quality care in this context is predicated on the care provider recognition of the emotional impact of care delivery on the care recipient. Our analysis identified that the overarching theme, of providing quality person-centred intimate care, requires creating and maintaining a relational space that promotes integrity. Conclusions: The provision of intimate personal care consists of a complex interplay at the level of resident/care provider interaction (micro level); health care organization (meso level); and policy (macro level). Each of these levels interacts with and influences the other two. The components identified in our model may provide the basis from which to further examine resident experiences of quality intimate personal care.
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Dignity-conserving care is a multifactorial construct, consisting of three primary domains, i.e. illness-related concerns, such as symptom distress; dignity-conserving perspectives and practices, such as continuity of the self,... more
Dignity-conserving care is a multifactorial construct, consisting of three primary domains, i.e. illness-related concerns, such as symptom distress; dignity-conserving perspectives and practices, such as continuity of the self, maintenance of pride and hopefulness; and social dimensions of dignity, such as privacy concerns, burden to others and aftermath concerns. Dignity-conserving care has recently been the focus of research in both somatic and mental care settings. In patients suffering from somatic disorders, particularly chronic and progressive disorders, loss of dignity is often manifested by loss of identity, shattering of their self-image or having psychological, interpersonal, spiritual and existential needs that are not being adequately addressed. Similar issues apply to psychiatric patient healthcare, where stereotypes, prejudice and discrimination continue to exist. Fractured dignity has been associated with increasing levels of physical and psychological symptoms, including spiritual pain. The delivery of dignity-conserving care is essential in achieving a holistic and healing approach, improving the satisfaction of patients, families and healthcare professionals alike.
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Psychology and Dignity
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The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical... more
The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. A prospective, multi-site approach was used. Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss ...
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Perception, Spirituality, Palliative Care, Hospice & Palliative Care Nursing, Compassion, and 13 moreMedicine, Healthcare, Learning, Systematic Reviews, Empathy, Humans, End of life care, Compassion Fatigue, Scoping review, Public health systems and services research, Compassionate Care, Health Personnel, and Delivery of Health Care
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Oncology, Qualitative methodology, Palliative Care, Compassion, Qualitative Research, and 15 moreGrounded Theory, Healthcare, Empathy, Canada, Humans, End of life care, Female, Male, Middle Aged, Neoplasms, Inpatients, Elsevier, Compassionate Care, Interviews as topic, and Medical and Health Sciences
A central tenet of palliative care is to help people die with... more
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.
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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... more
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.
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Nursing, Palliative Care, Medical Humanities, Medicine, Activities of Daily Living, and 15 moreHumans, Dignity, Female, Manitoba, Male, Cohort Study, Lancet, Aged, Cross Section, Neoplasms, Educational Status, Cross Sectional Studies, Investigative Techniques, Cohort Studies, and Medical and Health Sciences
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Nursing, Anthropology, Death, Cancer, Content Analysis, and 15 moreMedical Humanities, Activities of Daily Living, Canada, Humans, Dignity, End of life care, Manitoba, Attitude, Empirical Research, Family Relations, Neoplasms, Cost of Illness, Investigative Techniques, Empirical Model, and Interviews as topic
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Psychology, Nursing, Psychometrics, Medicine, Activities of Daily Living, and 15 moreMotivation, Humans, Personality Assessment Inventory, Female, Psychosomatics, Male, Clinical Sciences, Aged, Middle Aged, Neoplasms, Health Care Provider, Medicine and Health Sciences, Pain Measurement, attitude to health, and Personality Inventory
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... more
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’. Exempla...
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Objective:The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly.Method:Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in... more
Objective:The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly.Method:Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs).Results:Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy ...