Canada's population is aging, and seniors constitute the fastest growing demographic in the nation. The chronic health conditions, limited social support, functional decline, and cognitive impairment experienced by seniors may necessitate admission to a personal care home (PCH) setting up until the time of their death. The ethical problems that arise in the care of dying patients are numerous and complicated. The care of dying seniors in PCHs, however, is largely provided by frontline workers such as healthcare aides (HCAs), who usually have little training in palliative care or ethics. Research examining the identification and resolution of ethical problems in care of the dying has been conducted from the perspectives of nurses and physicians in various clinical settings, but the voice of HCAs in PCHs is virtually absent from clinical ethics. Given that the inability to satisfactorily resolve ethical issues in clinical practice is associated with feelings of guilt, powerlessness, avoiding contact with patients, failing to provide good physical care, and increased staff turnover, an empirical examination of HCAs' experiences of ethically challenging situations is warranted. We conducted a phenomenological study to access the lived experience of HCAs (N = 12) working in proprietary and nonproprietary care homes as they encountered situations they deemed ethically challenging in providing end-of-life care to dying seniors. The findings reported here explicate: (1) the types of situations that are ethically problematic for HCAs; (2) the meanings they assign to these situations, and (3) the impact such situations have on the provision of end-of-life care.
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
A mixed methodology mail survey was used to gauge level of customer satisfaction with, and identify issues that may help improve, personal emergency response system service delivery. A total of 1,236 surveys were mailed out to subscribers of Victoria Lifeline (Canada; n = 618) and their designated responders (n = 618). Overall response rate was 50%. Significant predictors of subscriber and responder satisfaction were satisfaction with the service during an emergency and whether expectations of service were met. In addition, for responders, customer service also predicted satisfaction. Thematic analysis of subscriber and responder comments identified the need for improvement in several areas: equipment, cost of the service, training sessions for users, and communication between subscribers and service providers. Although more than 95% of subscribers and responders were satisfied with the service, the findings provide direction to personal emergency response service providers about ways in which their product and service delivery might be enhanced, and underscore the need for research examining the impacts of response systems on family caregivers and public policy regarding community care solutions.
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
Despite use of the term dignity in arguments for and against a patient's 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.
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.
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.
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).
Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.
Comment In: J Clin Oncol. 2005 Aug 20;23(24):5427-816110001
Does access to a colorectal cancer screening website and/or a nurse-managed telephone help line provided to patients by their family physician increase fecal occult blood test uptake?: A pragmatic cluster randomized controlled trial study protocol.
Fecal occult blood test screening in Canada is sub-optimal. Family physicians play a central role in screening and are limited by the time constraints of clinical practice. Patients face multiple barriers that further reduce completion rates. Tools that support family physicians in providing their patients with colorectal cancer information and that support uptake may prove useful. The primary objective of the study is to evaluate the efficacy of a patient decision aid (nurse-managed telephone support line and/or colorectal cancer screening website) distributed by community-based family physicians, in improving colorectal cancer screening rates. Secondary objectives include evaluation of (dis)incentives to patient FOBT uptake and internet use among 50 to 74 year old males and females for health-related questions. Challenges faced by family physicians in engaging in collaborative partnerships with primary healthcare researchers will be documented.
A pragmatic, two-arm, randomized cluster controlled trial conducted in 22 community-based family practice clinics (36 clusters) with 76 fee-for-service family physicians in Winnipeg, Manitoba, Canada. Each physician will enroll 30 patients attending their periodic health examination and at average risk for colorectal cancer. All physicians will follow their standard clinical practice for screening. Intervention group physicians will provide a fridge magnet to each patient that contains information facilitating access to the study-specific colorectal cancer screening decision aids (telephone help-line and website). The primary endpoint is patient fecal occult blood test completion rate after four months (intention to treat model). Multi-level analysis will include clinic, physician and patient level variables. Patient Personal Health Identification Numbers will be collected from those providing consent to facilitate analysis of repeat screening behavior. Secondary outcome data will be obtained through the Clinic Characterization Form, Patient Tracking Form, In-Clinic Patient Survey, Post-Study Follow-Up Patient Survey, and Family Physician Survey. Study protocol approved by The University of Manitoba Health Research Ethics Board.
The study intervention has the potential to increase patient fecal occult blood test uptake, decrease colorectal cancer mortality and morbidity, and improve the health of Manitobans. If utilization of the website and/or telephone support line result in clinically significant increases in colorectal cancer screening uptake, changes in screening at the policy- and system-level may be warranted.
The practice of allowing family members to be present at the bedside during cardiopulmonary resuscitation is a controversial one and represents a paradigm shift among health care providers. To date, no research has examined this issue from the perspective of Canadian critical care nurses.
This research was undertaken to identify the practices and preferences of Canadian critical care nurses regarding family presence during resuscitation (FPDR), the extent to which formal FPDR policies exist in hospitals, and the level of awareness among members of the Canadian Association of Critical Care Nurses (CACCN) regarding CACCN's position statement on FPDR. A secondary objective was to compare responses from Canadian critical care nurses to the responses of American critical care and ER nurses in a 2003 survey.
An 18-item online survey was sent to 944 members of CACCN.
The response rate was 47.7% (n = 450). The majority of respondents (92%) supported the option of FPDR in critical care; slightly more than their U.S. counterparts (76%). Within the last year, although fewer Canadian nurses (18.5%) compared with American nurses (31%) had been asked by family members to be brought to the bedside during CPR, the majority of both Canadian nurses (65%) and American nurses (57%) reported they had either taken a family member to the bedside, or would do so if the opportunity arose. Only 8% of Canadian respondents reported that written guidelines/policies for FPDR were available in their hospital (5% for U.S. survey respondents). Half (49.8%) of the respondents were aware that CACCN had a position statement on FPDR.
Although guidelines or policies for FPDR are not available in most hospitals where respondents worked, the majority of critical care nurses support FPDR and either had taken or would be willing to take family members to the bedside during CPR. The willingness of nurses in critical care to support FPDR suggests the need for more formal policies in hospitals and the development of algorithms to facilitate this process.
This paper reports the findings of a study that generated a conceptual model of the nursing behaviours and social processes inherent in the provision of quality end-of-life care from the perspective of nurses working in an acute care setting.
The majority of research examining the issue of quality end-of-life care has focused on the perspectives of patients, family members and physicians. The perspective of nurses has generally received minimal research attention, with the exception of those working within palliative or critical care. The vast majority of hospitalized patients, however, continue to be cared for and die on medical units. To date, little research has been conducted examining definitions and determinants of quality end-of-life care from the perspective of nurses working in acute adult medical settings.
Grounded theory method was used in this study of 10 nurses working on acute medical units at two tertiary university-affiliated hospitals in central Canada. Data were collected during 2002 by interview and participant observation.
The basic social problem uncovered in the data was that of nurses striving to provide high quality end-of-life care on an acute medical unit while being pulled in all directions. The unifying theme of 'Creating a haven for safe passage' integrated the major sub-processes into the key analytic model in this study. 'Creating a haven for safe passage' represents a continuum of behaviours and strategies, and includes the sub-processes of 'facilitating and maintain a lane change'; 'getting what's needed'; 'being there'; and 'manipulating the care environment'.
The ability of nurses to provide quality end-of-life care on an acute medical unit is a complex process involving many factors related to the patient, family, healthcare providers and the context in which the provision of end-of-life care takes place.