More so than for perhaps any other area of health care, the knowledge base supporting the basic elements of palliative care clinical practice is still lacking. Numerous reports have highlighted the critical need for research to advance the science of palliative care, but investments do not match this. A recent report on investment in palliative and end-of-life research in Canada revealed that for every $20 spent on cancer prevention services and basic research only $1 was spent on palliative care research (Canadian Cancer Research Alliance and Canadian Partnership Against Cancer, 2011); similar findings are reported for other countries.
Palliative home care is an important component of the care system for patients at the end of life and case management is considered an essential element of the Canadian home care system. Case managers play a critical role in allocating resources, thus influencing the costs and the viability of palliative home care. Case management education programs focused on care coordination with specialty palliative care populations are nonexistent. An education program targeted at improving the knowledge and skills of case managers in allocating resources to palliative care populations was developed and pilot-tested in a metropolitan Canadian city home care program. Core curriculum was based on an initial learning needs assessment and used case-based problem solving to enhance case-management skills. An improvement in knowledge was noted on posttests and case managers described increased comfort and confidence in their role as case managers to this patient population. Home care organizations caring for palliative care populations must ensure case managers are prepared for case management roles with specialty populations if the home is to be rendered an appropriate and viable care setting for patients at the end of life.
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.
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.
Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families.
A number of palliative care delivery models have been proposed to address the structural and process gaps in this care. However, the specific elements required to form competent systems are often vaguely described.
The purpose of this study was to explore whether a set of modifiable health system factors could be identified that are associated with population palliative care outcomes, including less acute care use and more home deaths.
A comparative case study evaluation was conducted of 'palliative care' in four health regions in Ontario, Canada. Regions were selected as exemplars of high and low acute care utilization patterns, representing both urban and rural settings. A theory-based approach to data collection was taken using the System Competency Model, comprised of structural features known to be essential indicators of palliative care system performance. Key informants in each region completed study instruments. Data were summarized using qualitative techniques and an exploratory factor pattern analysis was completed.
43 participants (10+ from each region) were recruited, representing clinical and administrative perspectives. Pattern analysis revealed six factors that discriminated between regions: overall palliative care planning and needs assessment; a common chart; standardized patient assessments; 24/7 palliative care team access; advanced practice nursing presence; and designated roles for the provision of palliative care services.
The four palliative care regional 'systems' examined using our model were found to be in different stages of development. This research further informs health system planners on important features to incorporate into evolving palliative care systems.
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.
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.
Previous studies have reported survival estimates in palliative populations using the Palliative Performance Scale (PPS) (where 100=best status, 0=death). However, little research has examined the association of the PPS with hazard of death in ambulatory populations.
We examined the association between performance status and the instantaneous hazard of death in ambulatory cancer patients, using longitudinal PPS scores.
This retrospective, population-based cohort study included cancer outpatients who had at least one PPS assessment completed between 2007 and 2009. PPS scores were recorded opportunistically by health care providers at clinic or home care visits. We used a Cox proportional hazards model to determine the relative hazard of death based on repeated measures of PPS score, while controlling for other covariates.
Among 11,342 qualifying cancer patients, there were 54,207 PPS assessments. The distribution of PPS scores at first assessment were 23%, 56%, 20%, and 1% for PPS scores of 100, 90-70, 60-40, and = 30, respectively. A quarter of the cohort died within 6 months of the first assessment. The relative hazard of death increases by a factor of 1.69 (95% confidence interval [CI]: 1.72-1.67) for each 10-point decrease in PPS score. Thus the hazard of death increases by 8.2 (1.69(4)) times for a person with PPS score of 30 compared with a person with a score of 70.
The PPS was significantly associated with hazard of death in ambulatory cancer patients; the relative hazard of death increased based on lowered PPS scores. Providers should consider broadening its use to include patients throughout their disease trajectory.