Palliative Medicine

The aims of this study were to describe the pain and use of pain medication in nursing home patients and examine which variables that were associated with pain. Inpatients (n = 307) older than 64 years from nursing homes were included. Pain was measured with a 4-point verbal rating scale in the self-reported group (SRG) and Doloplus-2 in the proxy-rated group (PRG). The mean age was 86 years (SD, 7), and more than two-thirds were female. A total of 128 (60%) patients were able to self-report their pain. Approximately 50% of the SRG reported ‘pain now’, and of these, nearly 50% reported moderate or severe pain intensity. Better cognitive function was associated with higher pain and receiving more potent pain medication in the SRG. The pain prevalence in the PRG was higher than in the SRG (67.5% vs 51%), but no variable was associated with proxy-rated pain. Nearly 30% in the SRG and 40% in the PRG did not receive pain medication in spite of pain. Pain is still a huge problem in the nursing homes, and more research is needed on pain management in nursing home residents.

There is evidence of improved effectiveness of specialised palliative care for terminally ill patients in comparison to conventional care. However, there is uncertainty about which model is better. The objective of this systematic review was to identify studies that compare specialised palliative care models between them assessing their effectiveness or cost-effectiveness. We searched studies published between 2003 and 2006 in several electronic databases and updated the search in MEDLINE up to 2008. Papers published before 2003 were identified by means of previous systematic reviews and manual search. Studies with broad designs comparing two or more specialised palliative care programmes in adults with terminal illness were selected. Six systematic reviews, three studies on effectiveness and one cost study were included. All systematic reviews drew the conclusion that specialised palliative care is more effective than conventional care. The methodological limitations of the original studies and the heterogeneity of programmes did not allow to draw conclusions about whether a specific model of specialised palliative care is more or less effective or cost-effective than other.

Hospital palliative care teams (HPCTs) are well established as multi-professional services to provide palliative care in an acute hospital setting and are increasing in number. However, there is still limited evaluation of them, in terms of efficacy and effectiveness. The gold standard method of evaluation is a randomised control trial, but because of methodological (e.g., randomisation), ethical and practical difficulties such trials are often not possible. HPCT is a complex intervention, and the specific situation in palliative care makes it challenging to evaluate (e.g., distress and cognitive impairment of patients). The quasi-experimental before-after study design has the advantage of enabling an experimental character without randomisation. But this has other weaknesses and is prone to bias, for example, temporal trends and selection bias. As for every study design, avoidance and minimisation of bias is important to improve validity. Therefore, strategies of selecting an appropriate control group or time series and applying valid outcomes and measurement tools help reducing bias and strengthen the methods. Special attention is needed to plan and define the design and applied method.

Open communication in cancer care has gained increasing importance in recent years and diagnostic disclosure is now common place. However, there is a significant variability in the sharing of prognostic information. Information needs may vary significantly over the disease trajectory, and there has been relatively little work done focussing on late illness. Using systematic review procedures, 13 studies were identified that addressed this issue. The evidence shows that all patients wanted honesty from their professional team and the vast majority wanted some broad indication of their prognosis, but that preferences for quantitative information were more varied. Benefits associated with realistic awareness included enhanced control and end-of-life planning, which was seen to engender hope. However, for a proportion of patients, hope and realism were irreconcilable when presented with detailed or unequivocal information. Professionals have a responsibility to provide information to patients, but also to respect the need to maintain some ambiguity about the future, if that is a patient’s wish. Therefore, prognostic discussions necessitate careful, individualised assessment, a process which can facilitate enhanced palliative care for patients with advanced cancer.

The Confusion Assessment Method (CAM) is widely used in the palliative care setting despite the fact that its performance in this population has not been validated. The aim of the study was to determine the sensitivity and specificity of the CAM when used by Non-Consultant Hospital Doctors (NCHDs) working in a specialist palliative care unit. A pilot phase was performed in which NCHDs received a 1-hour training session based on the original CAM training manual. 32 patients underwent 33 assessments in the pilot phase but the sensitivity of the CAM was only 0.5 (0.22–0.78) and specificity was 1.0 (0.81–1.0). An 'enhanced' training programme was devised that took place over two 1-hour sessions and involved case-based learning focused on the areas where the NCHDs were experiencing difficulty. 52 patients underwent 54 assessments in the main phase of the study and the performance of the CAM improved significantly. Sensitivity was 0.88 (0.62–0.98) and specificity was 1.0 (0.88–1.0). The results suggest that the CAM is a valid screening tool for delirium in the palliative care setting but its performance is dependent on the skill of the operator. NCHDs require a certain standard of training before becoming proficient in its use.

The aim of this study was to assess the relationship between sleep quality, pain, psychological distress, cognitive status and post-traumatic experience in advanced cancer patients. Participants were 82 advanced cancer patients referred to a palliative care unit for control of pain and other symptoms. A variety of assessment tools were used to examine the prevalence of sleep disturbance, the severity of pain and depression, hopelessness, cognitive function and quality of life. Using the Pittsburgh Sleep Quality Index (PSQI) 96% of patients were ‘poor sleepers’. Statistically significant associations were found between PSQI and the SF-12 (Short Form-12) Quality of Life Instrument (MCS, P < 0.0005, PCS, P < 0.0005), depression (Greek Depression Inventory) (P < 0.0005) and hopelessness (Beck Hopelessness Scale) (P = 0.003). Strong associations were also found between PSQI and IES-R (Impact of Event Scale-Revised) (P = 0.004). The strongest predictors of poor sleep quality in this model were MCS (P < 0.0005), PCS (P < 0.0005) and IES-R (P = 0.010). Post-traumatic experience and quality of life seemed to be the strongest predictors of sleep quality in a sample of advanced cancer patients referred for palliative care.

The objective of this study was to demonstrate the efficacy, safety and patient acceptability of the use of intranasal sufentanil for cancer-associated breakthrough pain. This was a prospective, open label, observational study of patients in three inpatient palliative care units in Australia. Patients on opioids with cancer-associated breakthrough pain and clinical evidence of opioid responsiveness to their breakthrough pain were given intranasal (IN) Sufentanil via a GO Medical™ patient controlled IN analgesia device. The main outcome measures were pain scores, need to revert to previous breakthrough opioid after 30 min, number of patients who chose to continue using IN sufentanil, and adverse effects. There were 64 episodes of use of IN sufentanil for breakthrough pain in 30 patients. There was a significant reduction in pain scores at 15 (P < 0.0001) and 30 min (P < 0.0001). In only 4/64 (6%) episodes of breakthrough pain did the participants choose to revert to their prestudy breakthrough medication. Twenty-three patients (77%) rated IN sufentanil as better than their prestudy breakthrough medication. The incidence of adverse effects was low and most were mild. Our study showed that IN sufentanil can provide relatively rapid onset, intense but relatively short lasting analgesia and in the palliative care setting it is an effective, practical, and safe option for breakthrough pain.

Residents in training are first-line physicians in hospital settings and they are in the process of developing knowledge and mastering clinical skills. They have to confront complex tasks calling upon their personal background, professional identity and relationships with the patients. We conducted a qualitative study investigating the difficulties they perceive in end-of-life care. In all, 24 consecutive residents were presented with a written query asking them to indicate the difficulties they identify in the management of patients hospitalised for end-of-life care. Their responses were submitted to content analysis. Physicians’ mean age was 28 ± 2.2 years, 37% were women, average postgraduate training duration was 2.5 ± 1.3 years. Content analysis elicited eight categories of difficulties: abitily to provide adequate explanations, understand the patients’ needs, have sufficient theoretical knowledge, avoid flight, avoid false reassurance, manage provision of time, face one’s limits as a physician and be able to help despite everything. Residents’ responses showed that they identify the complexity of care in terminally-ill patients early in their training. Their responses pointed to the ‘right distance’ in-between getting involved and preserving oneself as a dimension of major importance.

Interventions designed to assist informal caregivers who serve individuals at or near the end of life have predominantly focused on caregiving spouses. Can we define other caregiver subpopulations – by intensity of care provided – so as to enable better a) identification of caregiver needs and b) targeting of support to caregivers? The Health Omnibus Survey, an annual face-to-face survey in South Australia, collects health-related data from a representative sample of 4400 households. Piloted questions included in the 2001–2005 Health Omnibus surveys addressed death of a loved one, caregiving provided, impact of caregiving and caregiver characteristics. Of 18,224 respondents, 5302 reported a loved one’s death due to terminal illness in the previous 5 years. In all, 502 (10%) provided daily care [5–7 days/week], 619 (12%) provided intermittent care [2–4 days/week] and 425 (8%) provided rare care. Active (daily plus intermittent) caregivers, compared with non-active (rare) caregivers, were more often women (63% vs 50%; P < 0.0001). Daily caregivers were distinguishable from intermittent; daily caregivers were more often widowed (95% vs 7%; P < 0.0001) and ≥60 years (80% vs 64%; P < 0.0001); intermittent caregivers were more commonly children/parents (35%), other relatives (33%), or friends (26%; P < 0.0001) and were better educated, more active in paid work and wealthier. Financial burden, experience at time of death, ability to move on after the death and need for grief support also differed by intensity of caregiving. Caregiver subpopulations can be defined according to intensity of caregiving with distinct demographic features helping to distinguish them.

The Minimum Data Set (MDS) for UK specialist palliative care services was developed in 1995 to provide annual data on palliative care services. Data collected is used for local and national purposes including service management, monitoring and audit, the commissioning of services and the development of national policy. The emergence of Payment by Results and HealthCare Resource Groups, which will have an impact on the funding processes, together with identified limitations of the current MDS resulted in a project to revise the MDS. An action research approach was used for the project and had distinctive phases including modifying the MDS, a pilot phase and an expert panel consultation. Modifications to all the sections of the MDS and changes to terminology were made. The action research approach enabled revisions made based upon a national consensus and met the changing provision of specialist palliative care services for the UK.

We investigated the impact of perception of socioeconomic burden on beliefs regarding a patient’s autonomy in end-of-life (EOL) decision making. We also sought to identify the characteristics of individuals who advocate patient autonomy and their attitudes toward other EOL issues. A total of 1055 individuals from the Korean general population were interviewed through a telephone survey using a structured questionnaire that was designed to investigate public attitudes toward various EOL issues. Of 1019 individuals included in the analysis, 635 (62.3%) specified the patient and 221 (21.7%) the family, when asked who is the appropriate decision maker in terms of EOL decisions in the absence of perception of socioeconomic burden. In contrast, the numbers were 458 (44.9%) and 500 (49.1%), respectively, if substantial burden was assumed. Respondents who favoured the patient’s right to make decisions regardless of perception of socioeconomic burden numbered only 312 (30.6%) and were likely to be younger and have knowledge of hospice than who favoured family decision. Former group also favoured the disclosure of terminal illness to patients, withholding life-sustaining treatment, and preparation of advanced directives. Societal attitudes toward patient autonomy were significantly influenced by perception of socioeconomic burden. Open and balanced discussion about burden to family and adequate welfare support are thus suggested.