Manitoba Palliative Care Research Unit

Winnipeg, Canada

Manitoba Palliative Care Research Unit

Winnipeg, Canada
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Chochinov H.M.,University of Manitoba | Chochinov H.M.,Manitoba Palliative Care Research Unit | Kristjanson L.J.,Swinburne University of Technology | Kristjanson L.J.,Curtin University Australia | And 7 more authors.
The Lancet Oncology | Year: 2011

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, 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 (χ2=35·50, df=2; p<0·0001), improve quality of life (χ2=14·52; p=0·001), increase sense of dignity (χ2=12·66; p=0·002), change how their family saw and appreciated them (χ2=33·81; p<0·0001), and be helpful to their family (χ2=33·86; p<0·0001). Dignity therapy was significantly better than client-centred care in improving spiritual wellbeing (χ2=10·35; p=0·006), and was significantly better than standard palliative care in terms of lessening sadness or depression (χ2=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 (χ2=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. © 2011 Elsevier Ltd.

Ho A.H.Y.,University of Hong Kong | Chan C.L.W.,University of Hong Kong | Leung P.P.Y.,University of Hong Kong | Chochinov H.M.,Manitoba Palliative Care Research Unit | And 3 more authors.
Age and Ageing | Year: 2013

Background: the empirical Dignity Model has profoundly influenced the provision of palliativecare for older terminally ill patients in the West, as it provides practical guidance and intervention strategies for promoting dignity and reducing distress at the end-of-life. Objective: to examine the concept of 'living and dying with dignity' in the Chinese context, and explore the generalisability of the Dignity Model to older terminal patients in Hong Kong. Methods: using qualitativeinterviews, the concept of dignity was explored among 16 older Chinese palliative care patients with terminal cancer. Framework analysis with both deductive and inductive methods was employed. Results: the three major categories of themes of the Dignity Model were broadly supported. However, the subtheme of death anxiety was not supported, while two subthemes of generativity/legacy and resilience/fighting spirit manifested differently in the Chinese context. Furthermore, four new emergent themes have been identified. They include enduring pain, moral transcendence, spiritual surrender and transgenerational unity. Conclusion: these findings highlight both a cultural and a familial dimension in the construct of dignity, underline the paramount importance of cultural awarenessand competence for working with ethnically diverse groups, and call for a culturally sensitive andfamily oriented approach to palliative care interventions with older Chinese terminal patients. ©The Author 2013. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved.

Chochinov H.M.,Manitoba Palliative Care Research Unit
Healthcare Papers | Year: 2014

Like the rest of Canada, the vast majority of Quebecers do not have access to comprehensive, quality, palliative end-of-life care. Nevertheless, despite every substantive argument, compelling study, troubling precedent and cautionary tale regarding physician-hastened death, the Quebec Government has passed Bill 52 - a Bill legalizing euthanasia or what is euphemistically being called medical aid in dying (MAD). While the Bill purports to ensure that "everyone may have access, throughout the continuum of care, to quality care that is appropriate to their needs, including prevention and relief of suffering," it states that organizational structures, institutions and palliative care hospices will carry out this mandate "within the limits of the human, material and financial resources at their disposal." Perhaps, given the limitation of those resources, the only detail Bill 52 provides regarding how they will fulfill their mandate pertains to the administration and tracking of MAD. How will Quebecers feel when they realize that while their healthcare system can offer them euthanasia, it cannot assure them or their loved ones, access to healthcare professionals proficient in palliative care? All of which begs the question, is it really time to get MAD?.

Thompson G.N.,Manitoba Palliative Care Research Unit | Chochinov H.M.,Manitoba Palliative Care Research Unit | Chochinov H.M.,University of Manitoba
Palliative and Supportive Care | Year: 2010

Objective: To deliver quality care at the end of life, understanding the impact of various changes and life transitions that occur in older age is essential. This review seeks to uncover potential sources of distress in an elder's physical, psychological, social, and spiritual well-being to shed light on the unique challenges and needs facing this age group.Methods: Papers relating to older adults (aged 65 years and older or a mean age of 65 years and older) with advanced/terminal cancer receiving palliative, hospice, or end-of-life care published after 1998 were reviewed.Results: Older adults with advanced cancer have unique needs related to changes in their physical, psychological, social, and spirituals well-being. Changes in each of these domains offer not only the risk of causing distress but also the potential for growth and development during the final stages of advanced cancer.Significance of results: Being aware of the various changes that occur with aging will help health care professionals tailor interventions to promote dignity-conserving care and greatly reduce the potential for suffering at the end of life. © 2010 Cambridge University Press.

Chochinov H.M.,Manitoba Palliative Care Research Unit | Chochinov H.M.,University of Manitoba
Journal of Pain and Symptom Management | Year: 2013

Providing care for patients and caring about patients should go hand in hand. Caring implicates our fundamental attitude towards patients, and our ability to convey kindness, compassion and respect. Yet all too often, patients and families experience health care as impersonal, mechanical; and quickly discover that patienthood trumps personhood. The consequences of a medical system organized around care rather than caring are considerable. Despite technical competence, patients and families are less satisfied with medical encounters when caring is lacking. Lack of empathy and emotional disengagement from patients typifies health care provider burnout. Caring is the gateway to disclosure; without it, patients are less likely to say what is bothering them, leading to missed diagnoses, medical errors and compromised patient safety. There are also liability issues, with most complaints levied against health care professionals stemming from failures in care tenor. Formal education for health care providers lacks a continued focus on achieving a culture of caring. If caring really matters, health care systems can insist on certain behaviors and impose certain obligations on health care providers to improve care tenor, empathy, and effective communication. Caregivers need to be engaged in looking at their own attitudes towards patients, their own vulnerability, their own fears and whatever else it is that shapes their tone of care. Health care professionals must set aside some time, supported by their institutions, to advance a culture of caring - now is the time to take action. © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Chochinov H.M.,University of Manitoba | Chochinov H.M.,Manitoba Palliative Care Research Unit
Journal of Pain and Symptom Management | Year: 2011

Many people believe that spending large amounts of money on end-of-life care is unjustified and even irrational. This fails to recognize that the value of time, particularly quality time, appears to increase as death draws near. Paying for treatment that merely allows patients and families to avoid confronting the inevitability of death is wrong. However, palliative care, which can bolster the quality of a patient's remaining days, provides benefits that extend to the family and beyond. How can the notion of time gaining value toward the end of life be incorporated into conventional cost-benefit analyses? A standard QALY (Quality Adjusted Life Years) is the product of quality of life and time, without adjusting for any change in the value of time. An additional variable - a Valuation Index (Palliative) (or VIP) - needs to be factored into the equation, providing a rational explanation for what otherwise might be deemed irrational spending. When one recognizes the multitude of important things that happen as people approach the very end of life, the numbers start to add up. © 2011 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.

Houmann L.J.,Bispebjerg Hospital | Chochinov H.M.,University of Manitoba | Chochinov H.M.,Manitoba Palliative Care Research Unit | Kristjanson L.J.,Curtin University Australia | And 3 more authors.
Palliative Medicine | Year: 2014

Background: Dignity Therapy is a brief, psychosocial intervention for patients with incurable disease. Aim: To investigate participation in and evaluation of Dignity Therapy and longitudinal changes in patient-rated outcomes. Design: A prospective (pre/post) evaluation design was employed. Evaluation questionnaires were completed when patients received the generativity document (T1) and 2 weeks later (T2). Changes from baseline (T0) were measured in sense of dignity, Structured Interview for Symptoms and Concerns items, Patient Dignity Inventory, Hospital Anxiety and Depression Scale and European Organisation for Research and Treatment of Cancer QLQ-C15-PAL ( number: NCT01507571). Setting/participants: Consecutive patients with incurable cancer, =18 years, informed of prognosis and not having cognitive impairment/physical limitations precluding participation were included at a hospice and a hospital palliative medicine unit. Results: Over 2 years, 80 of 341 eligible patients completed Dignity Therapy. At T1, 55 patients completed evaluations, of whom 73%-89% found Dignity Therapy helpful, satisfactory and of help to relatives; 47%-56% reported that it heightened their sense of purpose, dignity and will to live. Quality of life decreased (mean = -9 (95% confidence interval: -14.54; -2.49)) and depression increased (mean = 0.31 (0.06; 0.57)) on one of several depression measures. At T2 (n = 31), sense of dignity (mean = -0.52 (-1.01; -0.02)) and sense of being a burden to others (mean = -0.26 (-0.49; -0.02)) improved. Patients with children and lower performance status, emotional functioning and quality of life were more likely to report benefit. Conclusions: This study adds to the growing body of evidence supporting Dignity Therapy as a valuable intervention in palliative care; a substantial subset of patients facing end of life found it manageable, relevant and beneficial. © The Author(s) 2013.

Sinclair S.,University of Calgary | Sinclair S.,Manitoba Palliative Care Research Unit | Chochinov H.M.,University of Calgary | Chochinov H.M.,Manitoba Palliative Care Research Unit | Chochinov H.M.,University of Manitoba
Current Opinion in Supportive and Palliative Care | Year: 2012

Purpose of review: The role of chaplains/spiritual care professionals and the importance of addressing spiritual needs within interdisciplinary oncology teams are in need of systematic review and critical appraisal. This review focuses on four key areas: basic concepts of spirituality within the healthcare domain; the relevance of spirituality within cancer care; the role of spiritual care within interdisciplinary cancer teams; and the current status of spiritual care professionals in interdisciplinary cancer teams. Recent findings: Addressing cancer patient's spiritual issues is recognized as a component of comprehensive cancer care. Spirituality has a positive effect on subjective and emotional aspects of cancer patient's health, including quality of life, wellbeing and distress. Failing to address cancer patients spiritual needs impacts patient wellbeing, satisfaction with care, perceived quality of care and is associated with higher healthcare costs. Although a variety of disciplines address spiritual issues, spiritual care professionals are recognized by patients, clinicians, researchers and within best practice guidelines of national health councils as specialists within this domain. Summary: Spiritual care professionals are increasingly recognized as integral members of interdisciplinary oncology teams. However, the full integration of spiritual care professionals within the standard practice of oncology interdisciplinary teams is lacking, as spiritual care services continue to be treated as ancillary services within cancer care organizations. © 2012 Wolters Kluwer Health | Lippincott Williams & Wilkins.

Penner J.L.,McGill University | McClement S.,University of Manitoba | McClement S.,Manitoba Palliative Care Research Unit | Lobchuk M.,University of Manitoba | And 2 more authors.
Journal of Pain and Symptom Management | Year: 2012

Context. Head and neck cancer patients with dysphagia frequently require tube feeding. Family members are often involved in caring for such patients but feel ill prepared to do so. Health professionals are in a key position to support family members who undertake caregiving responsibilities. The ability to provide support requires that the experiences of family caregivers (FCs) are well understood; however, few studies examining these experiences have been conducted. To address this gap, research is needed that examines and describes the caregiving experience from the perspective of family members themselves. Such work will provide an empirical base to guide health professionals' practice with FCs. Objectives. To explicate the lived experience of caring for a dysphagic relative with advanced head and neck cancer receiving tube feeding. Methods. A descriptive phenomenological approach was used. Six FCs participated in two in-depth interviews each. Spiegelberg's three-step approach guided data analysis. Results. The essence of FCs' experience was "negotiating a new normal" and includes the themes of 1) negotiating changing roles, 2) negotiating an altered lifestyle, 3) negotiating ways of coping, and 4) negotiating the meaning of the feeding tube. Themes 1 and 2 are reported on here. Conclusion. FCs experience significant challenges. Study findings provide direction for health professionals who work with FCs and underscore the need for future research geared toward developing and testing psychoeducational interventions aimed at supporting FCs in the important and difficult caregiving work they do. © 2012 U.S. Cancer Pain Relief Committee.

Chochinov H.M.,University of Manitoba | Chochinov H.M.,Manitoba Palliative Care Research Unit | Martens P.J.,University of Manitoba | Prior H.J.,University of Manitoba | Kredentser M.S.,University of Manitoba
Schizophrenia Research | Year: 2012

Context: The rate of health care and palliative care utilization for patients with schizophrenia near the end-of-life is currently unknown. Objective: Compare rate of health care services, including palliative care, used in the last 6-24. months of life for patients with and without schizophrenia. Design: Using the de-identified administrative data Repository at the Manitoba Centre for Health Policy; a matched cohort study between 1995/96 and 2007/08,comparing healthcare services utilized six months to two years prior to death of all (de-identified) decedents with a diagnosis of schizophrenia >. 10. years to decedents without a schizophrenia diagnosis.Setting: province of Manitoba, Canada (population 1.235 million). Participants: Schizophrenia definition: ICD-9-CM 295, or ICD-10-CA code of F20, F21, F23.2, F25 in hospital or physician files, over a 12-year period 1987-1998, in the 12. years prior to death for each individual. Decedents were matched (1:3) on age, sex, geography and date of death ±. 2. months. Main outcome measures: Health service utilization rates within six-months to two years prior to death. Results: In the last six months of life, compared to their matched cohort: decedents with schizophrenia had higher rates (52.1% vs. 24.4%, p. <. .00001) and number of days (89.2 vs. 40.3. days, p. <. .0001) residing in a nursing home; had higher ambulatory visit rates to general practitioners (6.4 vs. 5.5 visits per person, p. <. .0001), higher rate of visits to psychiatrists (0.53 vs. 0.07 visits per person) and lower rates of seeing other specialists. They were less likely to have opioid analgesia (aRR. =. 0.7157, p-value. =. 0.0006) or to receive palliative care (aOR. =. 0.48, 95% CI 0.41-0.57). Conclusion: End-of-life care is lacking for patients with schizophrenia. Compared to their matched cohort, these patients were much more likely to die in nursing homes, less likely to see specialists (other than psychiatrists), less likely to be prescribed analgesics, and less likely to receive palliative care. © 2012 Elsevier B.V.

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