The prevalence of constipation among patients in palliative care has varied in prior research, from 18% to 90%, depending on study factors.
The aim of this study was to describe and explore the prevalence and symptom distress of constipation, using different definitions of constipation, in patients admitted to specialized palliative care settings.
Data was collected in a cross-sectional survey from 485 patients in 38 palliative care units in Sweden. Variables were analyzed using logistic regression and summarized as odds ratio (OR).
The prevalence of constipation varied between 7% and 43%, depending on the definition used. Two constipation groups were found: (1) medical constipation group (MCG): =3 defecations/week, n=114 (23%) and (2) perceived constipation group (PCG): patients with a perception of being constipated in the last two weeks, n=171 (35%). Three subgroups emerged: patients with (1) only medical constipation (7%), (2) only perceived constipation (19%), and (3) both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.
The prevalence of constipation may differ, depending on the definition used and how constipation is assessed. In this study we found two main groups and three subgroups, analyzed from the definitions of frequency of bowel movements and experience of being constipated. To be able to identify constipation, the patients' definition has to be further explored and assessed.
Palliative care developed unevenly in Edmonton in the 1980s and early 1990s. Health care budget cuts created an opportunity for innovative redesign of palliative care service delivery. This report describes the components that were developed to build an integrated comprehensive palliative care program, the use of common clinical assessments and outcome evaluation that has been key to establishing credibility and ongoing support. Our program has continued to develop and grow with an ongoing focus on the core areas of clinical care, education, and research.
In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on "nondecisions" about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had "problems holding to the decision." The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was "communication barriers," a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.
To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals.
The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course.
An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times.
Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40).
The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered.
The course was appreciated and useful in the professionals' work, but it also created problems.
Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons.
Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories.
The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust.
Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.
A significant proportion of health care resources are consumed at end of life. As a result, decision and policy makers seek cost savings to enhance program planning. Most literature, however, combines the cost of all dying patients and, subsequently, fails to recognize the variation between trajectories of functional decline and utilization of health care services. In this article, we classified dying Albertans by categories of functional decline and assessed their utilization and costs. We used data from two years of health care utilization and costs for three annual cohorts of permanent residents of Alberta, Canada (April 1999 to March 2002). Literature, expert opinion, and cluster analysis were used to categorize the deceased according to sudden death, terminal illness, organ failure, frailty, and other causes of death. Expenditures were decomposed into constituent quantities and prices. We found that nearly 18,000 die per year in Alberta: sudden death (7.1%), terminal illness (29.8%), organ failure (30.5%), frailty (30.2%), and other causes (2.3%). Inpatient care remains the primary cost driver for all trajectories. Significant and predictable health care services are required by noncancer patients. Trajectories of costs are significantly different for the four categories of dying Albertans. Trajectories of dying are a useful classification for analyzing health care use and costs.
De-institutionalization of health care services provided to terminally ill cancer patients is a cost-effective strategy that underpins health care reforms in Canada. The objective of this study therefore is to evaluate the economic implications associated with Canadian innovations in the delivery of palliative care services.
We identified 16,282 adults who died of cancer between 1993 and 2000 in two Canadian cities with newly introduced palliative care programs. Linkage of administrative databases was used to measure healthcare resource utilization. We sought to describe the utilization of palliative care services and its consequences for overall health care system costs.
Use of palliative services increased from 45 to 81% of cancer patients during the study period. Identifiable public health care services cost dollars 28093Cdn/patient (19033US dollars, 11,508GBl, 17,778 euro) for terminally ill cancer patients in their last year of life. Acute care accounted for two-thirds (67%) of these costs; physician (10%), residential hospice care (8%), nursing homes (6%), home care (6%) and prescription medications (3%) comprise the remainder. Increased costs associated with the introduction of palliative care programs were offset by cost savings realized when terminally ill cancer patients spent less time in hospital. Palliative home care and residential hospice care accounted for the bulk of this substitution effect. Cost neutrality was observed from the public perspective.
These results demonstrate that the introduction of comprehensive and community-based palliative care services resulted in increased palliative care service delivery and cost neutrality, primarily achieved through a decreased use of acute care beds.
This paper describes a project undertaken by the Hospice Palliative End-of-Life Care Surveillance Team Network--one of four Cancer Surveillance and Epidemiology Networks established by the Canadian Partnership Against Cancer in 2009 to create information products that can be used to inform cancer control. The project was designed to improve the quality and use of existing electronic patient databases in its member organizations. The project's intent was to better understand terminally ill cancer patients in their final year of life, with noncancer as comparison. The network created an early design for a Web-based end-of-life care surveillance system prototype. Using a flagging process, anonymized data sets on cancer/ noncancer palliative patients and those who died in 2008-2009 were extracted and analyzed. The Australian palliative approach was adapted as the conceptual model based on the data sets available. Common data elements were defined then mapped to local data sets to create a common data set. Information products were created as online reports. Throughout the project, members were engaged in knowledge translation. Overall, the project was well received by network members. There are still major data-quality and linkage issues that require further work.
GOALS: (1). To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2). to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size. SUBJECTS AND METHODS: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed. MAIN RESULTS: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings. CONCLUSIONS: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.
Department of Social and Welfare Studies, Linköping University, LAH/Unit of Palliative Care, University Hospital, Linköping, and Palliative Education and Research Centre in the County of Östergötland, Östergötland, Sweden. email@example.com
Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.
Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.
Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.
The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.