Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial
TL;DR: 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.
Abstract: Summary 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 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 2 =33·86; p 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 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.
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TL;DR: The wellbeing of elderly people is an important objective for both economic and health policy and present new analyses about the pattern of wellbeing across ages and the association between wellbeing and survival at older ages.
1,334 citations
City of Hope National Medical Center1, Harvard University2, American Society of Clinical Oncology3, Virginia Commonwealth University4, University of North Carolina at Chapel Hill5, University of Michigan6, Northwestern University7, National Coalition for Cancer Survivorship8, Princess Margaret Cancer Centre9, Johns Hopkins University10
TL;DR: The guideline update reflects changes in evidence since the previous guideline and inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment.
Abstract: Purpose To provide evidence-based recommendations to oncology clinicians, patients, family and friend caregivers, and palliative care specialists to update the 2012 American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) on the integration of palliative care into standard oncology care for all patients diagnosed with cancer. Methods ASCO convened an Expert Panel of members of the ASCO Ad Hoc Palliative Care Expert Panel to develop an update. The 2012 PCO was based on a review of a randomized controlled trial (RCT) by the National Cancer Institute Physicians Data Query and additional trials. The panel conducted an updated systematic review seeking randomized clinical trials, systematic reviews, and meta-analyses, as well as secondary analyses of RCTs in the 2012 PCO, published from March 2010 to January 2016. Results The guideline update reflects changes in evidence since the previous guideline. Nine RCTs, one quasiexperimental trial, and five secondary analyses from RCTs in the 2012 PCO on providing palliative care services to patients with cancer and/or their caregivers, including family caregivers, were found to inform the update. Recommendations Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.
1,283 citations
Additional excerpts
...One study with these outcomes informed Clinical Questions 3 and 4.(12) Several studies had more than one primary outcome....
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TL;DR: Fatigue is a frequently underreported complication in patients with cancer and, when reported, is responsible for reduced quality of life.
Abstract: Cancer-related fatigue is defined as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning. It is one of the most common side effects in patients with cancer. Fatigue has been shown to be a consequence of active treatment, but it may also persist into posttreatment periods. Furthermore, difficulties in end-of-life care can be compounded by fatigue. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Cancer-Related Fatigue provide guidance on screening for fatigue and recommendations for interventions based on the stage of treatment. Interventions may include education and counseling, general strategies for the management of fatigue, and specific nonpharmacologic and pharmacologic interventions. Fatigue is a frequently underreported complication in patients with cancer and, when reported, is responsible for reduced quality of life. Therefore, routine screening to identify fatigue is an important component in improving the quality of life for patients living with cancer.
544 citations
Oslo University Hospital1, University College London2, University of Texas MD Anderson Cancer Center3, University of Valencia4, University of Technology, Sydney5, Vrije Universiteit Brussel6, University of Edinburgh7, University of Vic8, Princess Margaret Cancer Centre9, Haukeland University Hospital10, King's College London11, University Hospital Heidelberg12, Copenhagen University Hospital13, University of Lausanne14, University of Göttingen15
TL;DR: This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care.
Abstract: Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.
387 citations
TL;DR: This large randomized controlled study provides strong support for the efficacy of meaning-centered group psychotherapy as a treatment for psychological and existential or spiritual distress in patients with advanced cancer.
Abstract: Purpose To test the efficacy of meaning-centered group psychotherapy (MCGP) to reduce psychological distress and improve spiritual well-being in patients with advanced or terminal cancer. Patients and Methods Patients with advanced cancer (N = 253) were randomly assigned to manualized eight-session interventions of either MCGP or supportive group psychotherapy (SGP). Patients were assessed before and after completing the treatment and 2 months after treatment. The primary outcome measures were spiritual well-being and overall quality of life, with secondary outcome measures assessing depression, hopelessness, desire for hastened death, anxiety, and physical symptom distress. Results Hierarchical linear models that included a priori covariates and only participants who attended ≥ three sessions indicated a significant group × time interaction for most outcome variables. Specifically, patients receiving MCGP showed significantly greater improvement in spiritual well-being and quality of life and significant...
359 citations
References
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Book•
01 Dec 1969TL;DR: The concepts of power analysis are discussed in this paper, where Chi-square Tests for Goodness of Fit and Contingency Tables, t-Test for Means, and Sign Test are used.
Abstract: Contents: Prefaces. The Concepts of Power Analysis. The t-Test for Means. The Significance of a Product Moment rs (subscript s). Differences Between Correlation Coefficients. The Test That a Proportion is .50 and the Sign Test. Differences Between Proportions. Chi-Square Tests for Goodness of Fit and Contingency Tables. The Analysis of Variance and Covariance. Multiple Regression and Correlation Analysis. Set Correlation and Multivariate Methods. Some Issues in Power Analysis. Computational Procedures.
115,069 citations
TL;DR: It is concluded that this is a simple and useful method for the regular assessment of symptom distress in the palliative care setting.
Abstract: We describe a simple method for the assessment of symptoms twice a day in patients admitted to a palliative care unit. Eight visual analog scales (VAS) 0-100 mm are completed either by the patient alone, by the patient with nurse's assistance, or by the nurses or relatives at 10:00 and 18:00 hours, in order to indicate the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, and sensation of well-being. The information is then transferred to a graph that contains the assessments of up to 21 days on each page. The sum of the scores for all symptoms is defined as the symptom distress score. The Edmonton Symptom Assessment System (ESAS) was carried out for 101 consecutive patients for the length of their admission to our unit. Of these, 84% were able to make their own assessment sometime during their admission. However, before death 83% of assessments were completed by a nurse or relative. Mean symptom distress score was 410 +/- 95 during day 1 of the admission, versus 362 +/- 83 during day 5 (p less than 0.01). Mean symptom distress scores throughout the hospitalization were 359 +/- 105, 374 +/- 93, 359 +/- 91 and 406 +/- 81 when the ESAS was completed by the patient alone, patient with nurse's assistance (p = N.S.), nurse alone (p = N.S.), or relative (p less than 0.01) respectively. We conclude that this is a simple and useful method for the regular assessment of symptom distress in the palliative care setting.
2,186 citations
"Effect of dignity therapy on distre..." refers methods in this paper
...Additional measurements were a two-item Quality of Life Scale(14) and an Edmonton SymptomAssessment Scale, modified to include a will-to-live visual analogue scale.(15) All scales were administered at baseline and immediately after study completion....
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TL;DR: Results of the two studies demonstrate that the FACIT-Sp is a psychometrically sound measure of spiritual well-being for people with cancer and other chronic illnesses.
Abstract: A significant relation between religion and better health has been demonstrated in a variety of healthy and patient populations. In the past several years, there has been a focus on the role of spirituality, as distinct from religion, in health promotion and coping with illness. Despite the growing interest, there remains a dearth of well-validated, psychometrically sound instruments to measure aspects of spirituality. In this article we report on the development and testing of a measure of spiritual well-being, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp), within two samples of cancer patients. The instrument comprises two sub scales—one measuring a sense of meaning and peace and the other assessing the role of faith in illness. A total score for spiritual well-being is also produced. Study 1 demonstrates good internal consistency reliability and a significant relation with quality of life in a large, multiethnic sample. Study 2 examines convergent validity with 5 other measures of religion and spirituality in a sample of individuals with mixed early stage and metastatic cancer diagnoses. Results of the two studies demonstrate that the FACIT-Sp is a psychometrically sound measure of spiritual well-being for people with cancer and other chronic illnesses.
1,383 citations
Book•
16 Nov 1997
TL;DR: The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
Abstract: When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening. Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care. This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life: * Determining diagnosis and prognosis and communicating these to patient and family. * Establishing clinical and personal goals. * Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
1,175 citations
TL;DR: The BC group showed a pattern of greater posttraumatic growth, particularly in relating to others, appreciation of life, and spiritual change, which was positively associated with perceived life-threat, prior talking about breast cancer, income, and time since diagnosis.
Abstract: Cancer may be viewed as a psychosocial transition with the potential for positive and negative outcomes. This cross-sectional study (a) compared breast cancer (BC) survivors' (n = 70) self-reports of depression, well-being, and posttraumatic growth with those of age- and education-matched healthy comparison women (n = 70) and (b) identified correlates of posttraumatic growth among BC survivors. Groups did not differ in depression or well-being, but the BC group showed a pattern of greater posttraumatic growth, particularly in relating to others, appreciation of life, and spiritual change. BC participants' posttraumatic growth was unrelated to distress or well-being but was positively associated with perceived life-threat, prior talking about breast cancer, income, and time since diagnosis. Research that has focused solely on detection of distress and its correlates may paint an incomplete and potentially misleading picture of adjustment to cancer.
977 citations