The alleviation of suffering is a central goal of palliative care, but little research has addressed the construct of suffering as a global experience of the whole person. We inquired into the sense of suffering among patients with advanced cancer to investigate its causes and correlates.
Semistructured interviews were administered to 381 patients. The interviews inquired about physical symptoms, social concerns, psychological problems, and existential issues. We also asked, "In an overall, general sense, do you feel that you are suffering?"
Almost half (49.3%) of respondents did not consider themselves to be suffering, and 24.9% felt that they suffered only mildly. However, 98 participants (25.7%) were suffering at a moderate-to-extreme level. The latter participants were more likely to experience significant distress on 20 of the 21 items addressing symptoms and concerns; the highest correlations were with general malaise (rho [rho]= 0.56), weakness ( = 0.42), pain ( = 0.40), and depression ( = .39). In regression analyses, physical symptoms, psychological distress, and existential concerns, but not social issues, contributed to the prediction of suffering. In qualitative narratives, physical problems accounted for approximately half (49.5%) of patient reports of suffering, with psychological, existential, and social concerns accounting for 14.0%, 17.7%, and 18.8%, respectively.
Many patients with advanced cancer do not consider themselves to be suffering. For those who do, suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.
Institute for Rehabilitation Research and Development, The Rehabilitation Centre, The Ottawa Hospital, Ottawa, ON, and Department of Psychiatry, University of Manitoba, Winnipeg, Canada. firstname.lastname@example.org
To investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death.
In the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were followed prospectively.
Attitudes toward the legalization of euthanasia or PAS were determined, as was the personal interest in receiving a hastened death. Demographic and clinical characteristics were also recorded, including a 22-item structured interview of symptoms and concerns.
There were 238 participants (62.8%) who believed that euthanasia and/or PAS should be legalized, and 151 (39.8%) who would consider making a future request for a physician-hastened death. However, only 22 (5.8%) reported that, if legally permissible, they would initiate such a request right away, in their current situations. This desire for hastened death was associated with lower religiosity (p=.010), reduced functional status (p=.024), a diagnosis of major depression (p
The purpose of this article is to identify how inclusive and accessible palliative care can be achieved for all, including those labelled as vulnerable populations.
Drawing on a review of existing literature as well the research of the Vulnerable Persons and End-of-Life New Emerging Team (VP-NET), this article reflects on what changes can be made within palliative care to make it more inclusive.
Experiences of marginalization often result, intentionally or unintentionally, in differential treatment in healthcare. This increased vulnerability may result from attitudes of healthcare providers or from barriers as a result of "normal" care practices and policies that may exclude or stigmatize certain populations. This may include identifying when palliative care is necessary, who receives palliative care and where, and what is necessary to complement palliative care.
Inclusive and accessible palliative care can become possible through building on the existing strengths in palliative care, as well as addressing existing barriers. This may include treating the whole person and that person's support team, including paid support workers, as part of the unit of care. It involves ensuring physically accessible hospice and palliative care locations, as well as thinking creatively about how to include those excluded in traditional locations. Inclusive palliative care also ensures coordination with other care services. Addressing the barriers to access, and inclusion of those who have been excluded within existing palliative care services, will ensure better palliative and end-of-life care for everyone.
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.
Comment In: Lancet. 2002 Dec 21-28;360(9350):1997-812504390
Comment In: Lancet. 2003 Mar 1;361(9359):78312620760
Studies of patients who are terminally ill consistently identify strong associations between "sense of burden to others" and marked end-of-life distress. However, little research has addressed the issue of burden to others among patients nearing death. The aim of this study was to carefully examine "burden to others" and clarify its relationship with various psychosocial, physical, and existential issues arising in patients who are terminally ill. A cohort of 211 patients with end-stage cancer was assessed, using an assortment of validated psychometrics to document psychosocial, physical, and existential aspects of their end-of-life experience. This included an assessment of their sense of "burden to others." Forty percent of participants indicated a negligible sense of burden to others, scoring within the lowest quarter on an ordinal measure of "burden to others;" 25% scored within the second lowest quarter; 12% within the third quarter; and 23% within the highest or most severe range. The most highly correlated variables with "sense of burden to others" included depression (r=0.460; df=201, P
The Patient Dignity Inventory (PDI) is a novel 25-item psychometric instrument, designed to identify multiple sources of distress (physical, functional, psychosocial, existential, and spiritual) commonly seen in patients who are terminally ill. It was also designed to help guide psychosocial clinicians in their work with patients. While its validity and reliability have been studied within the context of palliative care, its utility in clinical settings has not as yet been examined.
The purpose of this study was to determine how psychosocial oncology professionals would use the PDI with within their practice and what utility it might have across the broad spectrum of cancer.
Between October 2008 and January 2009, psychosocial oncology clinicians from across Canada were invited to use the PDI to determine their impressions of this approach in identifying distress and informing their practice.
Ninety participants used the PDI and submitted a total of 429 feedback questionnaires detailing their experience with individual patients. In 76% of instances, the PDI revealed one or more previously unreported concerns; in 81% of instances, clinicians reported that the PDI facilitated their work. While it was used in a wide range of circumstances, clinicians were more inclined to apply the PDI to patients engaged in active treatment or palliation, rather than those in remission, having recently relapsed, or newly diagnosed. Besides its utility in identifying distress, the PDI enabled clinicians to provide more targeted therapeutic responses to areas of patient concern.
While this study suggests various clinical applications of the PDI, it also provides an ideal forerunner for research that will directly engage patients living with cancer.
Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources of dignity-related distress among patients nearing the end of life. Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the PDI. The 25-items of the PDI derive from a model of dignity in the terminally ill. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the Terminally Ill. Cronbach's coefficient alpha for the PDI was 0.93; the test-retest reliability was r = 0.85. Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress. The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.
The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly.
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).
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 would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families.
This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits--and the effects on healthcare staff--make this area one meriting further study.
Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.