Palliative Medicine

Clinical experience suggests that many symptoms occur together. In this paper, we examine the rationale and evidence base for symptom clusters in different medical fields, particularly the cluster phenomenon in cancer. Cancer symptom clusters are a reality. Various symptoms that cluster clinically have also been verified statistically. Specific clusters such as nausea—vomiting, anxiety—depression, and cough—dyspnea are evident on both clinical observation and in research investigation. Fatigue—pain and fatigue—insomnia—pain have also been demonstrated statistically as clusters. Another proposed cluster ‘depression—fatigue—pain’ seems relevant to clinical practice. Other clusters may serve only as theoretical models that illustrate possible common biological etiologies in cancer; they need to be validated in future research. Analysis of the literature is complicated by considerable inconsistencies across studies. Discrepancies between clinically defined and statistically obtained clusters raise important questions. We must consider the analytical techniques used, and how methodology might influence cluster occurrence and composition. Further research is warranted to establish universally accepted statistical methods and assessment tools for symptom cluster research.

Symptomatic venous thromboembolism (VTE) occurs in 15% of patients with advanced malignancy. Primary thromboprophylaxis using low-molecular-weight heparin (LMWH) is supported by Level 1A evidence but is under-utilized in the palliative setting. A systematic search was performed of Medline, Cochrane Library, EMBASE, AMED, and Web of Science for papers published between 1960 and January 2010 using search terms: ‘palliative’, ‘thromboprophylaxis’, ‘thromboembolism’, ‘heparin’, and ‘advanced cancer’. Forty-two citations were obtained, of which 34 were excluded as they dealt with treatment of VTE, novel anticoagulants, or LMWH as a cancer treatment. Eight original articles were reviewed independently by two authors. Data was extracted according to a predetermined questionnaire. Studies examined practice in specialist palliative care (SPC) units, and attitudes held by a total of 32 physicians and 198 patients. Patients find LMWH acceptable, particularly patients who experienced a sudden decline in performance status. Reluctance to prescribe LMWH is based on physicians’ concerns regarding negative impact on quality of life, and lack of evidence specific to the palliative care setting. In conclusion, LMWH prophylaxis should be implemented in patients with a previously good performance status who have a transiently increased risk of VTE and no contraindications. Further research is required using outcome measures specific to palliative care.

Since October 2007 staff across health and social care services in England and Wales have been guided by the Mental Capacity Act (2005) in the provision of care for those who may lack capacity to make some decisions for themselves. This paper reports on the findings from a study with 26 staff members working in three palliative and three neurological care centres. Semistructured interviews were used to gain an understanding of their knowledge of the Mental Capacity Act, the issue of capacity itself and the documentation processes associated with the introduction of the Act and in line with advance care planning. Within this setting advance care planning is a key part of care provision and the mental capacity of service users is a regular issue. Findings show that staff generally had a good understanding of issues around capacity but felt unclear about some of the terminology related to the Mental Capacity Act, impacting on their confidence to discuss issues with service users and complete the documentation. Many felt the Act and its associated documentation had aided record-keeping in an area staff already delivered well in practice. Advance care planning in the context of the Mental Capacity Act is not as well embedded in practice as providers would like and consideration needs to be given to how and when staff should approach these issues with service users.

In order to provide equitable access to hospice at home palliative care services, it is important to identify the socio-economic factors associated with poorer access. In this population-based study we aimed to test the inverse care law by exploring how socio-economic status and other key demographic indicators were associated with referral rates in two distinct areas (Salford and Trafford) served by the same service. Secondary data from the UK National Census 2001, North West Cancer Intelligence Service (2004) and hospice at home service referral data (2004—06) was collated for both areas. Descriptive analysis profiled electoral ward characteristics whilst simple correlations and regression modelling estimated associations with referral rates. Referral rates were lower and cancer mortality higher in the most deprived areas (Salford). Referral rates were significantly associated with deprivation, particularly multiple deprivation, but not significantly associated with cancer mortality (service model and resources available were held constant). At the population level, the socio-economic characteristics of those referred to hospice at home rather than service provision strongly predicted referral rates. This has implications for the allocation and targeting of resources and contributes important findings to future work exploring equitable access at organizational and professional levels.

Definitive risk factors for constipation in palliative care remain poorly defined. A retrospective analysis of 211 admissions to a palliative care unit was undertaken, with the main aim being to identify some factors, which influence laxative prescription. On univariate analysis, significant unadjusted associations were found between two or more prescribed laxatives and a diagnosis of malignancy, morphine equivalent dose, type of illness phase and the subsequent phase type, length of phase, anticholinergic load imposed by medications, symptom severity and functional status. Multiple ordinal logistic regressions revealed the prescription of one laxative to be significantly associated with oral morphine-equivalent dose, total anticholinergic load (odds ratio [OR] 1.4, 95% CI = 1.0—2.0), disease progression to terminal phase and death (OR 0.1, 95% CI = 0.0—0.3), and length of phase (OR 1.1, 95% CI = 1.0—1.2). Similar results were obtained for the prescription of two or more laxatives. Two additional measures of function, toileting (OR 3.6, 95% CI = 1.6—8.2) and transfer (OR 0.4 95% CI = 0.2—0.9), also became significant. Total anticholinergic load was significantly associated with the prescription of a single laxative (OR 1.4, 95% CI = 1.0—2.0) and two or more laxatives (OR 1.8, 95% CI = 1.3—2.5) for each unit increase in anticholinergic load. Opioids and in particular opioids prescribed at higher doses, the total anticholinergic load associated with prescribed medications, the degree of impaired physical function of a person, their length of stay in a palliative care unit and their proximity to death were all strongly related to the prescription of laxatives.

UK medical school curricula incorporate training in end-of-life care as recommended by Tomorrow’s Doctors. Previous research suggests that hospice staff have concerns about the burden on patients when participating in medical student teaching and may gatekeep access to patients. This qualitative study uses semistructured interviews to explore and compare the views of hospice patients and health care staff about patient involvement in medical student teaching. Fifteen patients and 14 staff members were recruited from a single UK hospice involved in teaching third year medical students. Hospice patients, who have been involved in teaching, are strongly positive about meeting medical students and staff carefully select patients based on a number of issues.

Hospice care is promoted as a model for improving end of life care and decreasing burden on caregivers. However, hospice use is low in Latinos and little is known about how Latinos make hospice decisions and experience hospice once enrolled. Qualitative methods were used in this study to conduct in-depth interviews and focus groups with 15 Latino bereaved hospice family caregivers and 15 White non-Latino bereaved hospice family caregivers to describe hospice experiences and evaluate whether cultural factors affected the experience. Differences in decision-making and caregiving experience were identified that were influenced by culture. For example, cultural values of denial, secrecy about prognosis and a collective, family-centered system influenced hospice decisions and experience in Latinos but not non-Latinos. This study identifies a significant dilemma: that is, how to discuss hospice with a patient and family who prefer not to discuss a terminal prognosis. Future research is needed to extend these preliminary results; such results may be useful for designing interventions to improve end of life care and caregiving in Latinos.

We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0—18 years who were expected to die or had died; (5) had ‘parent’ in the title; and (6) focused on parents’ experiences or on parents’ perspectives regarding the child’s illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes ‘parental’ in this literature continues to be primarily ‘maternal’. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on ‘parental perspectives’. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed.