Reducing emotional distress in people caring for patients receiving specialist palliative care. Randomised trial. Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Improving end-of-life care: development and pilot-test of a clinical pathway. A palliative-care intervention and death at home: a cluster randomised trial.
Caring for relatives with advanced cancer may cause psychological and physical ill health.
                To evaluate the effectiveness of increased support for distressed, informal carers of patients receiving palliative care.
                The sample was composed of 271 informal carers who scored over 5 on the 28-item General Health Questionnaire (GHQ-28). The intervention comprised six weekly visits by a trained advisor. Primary outcome was carer distress (GHQ-28) at 4-week, 9-week and 12-week follow-up. Secondary outcomes were carer strain and quality of life, satisfaction with care, and bereavement outcome.
                Scores on the GHQ-28 fell below the threshold of 5/6 in a third of participants in each trial arm at any follow-up point. Mean scores in the intervention group were lower at all time points but these differences were not significant. No difference was observed in secondary outcomes. Carers receiving the intervention reported qualitative benefit.
                The intervention might have been too brief, and ongoing help might have had accruing benefits. Alternatively, informal carers of patients with cancer may already receive considerable input and the advisor's help gave little additional advantage; or caring for a dying relative is extremely stressful and no amount of support is going to make it much better. Despite evidence of high psychological distress and unmet needs, evaluated interventions for informal caregivers in palliative care are few. This study involved an observational outcome evaluation of attendees, and a comparison group, in specialist home palliative care. The measures included carer psychological status and patient physical status at baseline, 8 weeks, and 20 weeks. Qualitative data were collected regarding content, satisfaction with, and impact of intervention. Process data described the uptake, resources, and group activity. The intervention combined informal multiprofessional teaching with facilitated peer exchange and support, and was delivered over 6 sessions of 90 minutes per week. The uptake rate was 25%; carers were less likely to accept if they were in paid employment (OR=0.26, P=0.06), and more likely to accept if they utilized avoidance coping (OR=1.13, P=0.04) or their patient had worse physical status (OR=2.1, P=0.03). Attendees described significant support and knowledge gains from the multiprofessional input and peer group. Most relied on social comparison processes to appraise their situation. Potential detection of significant effects on global psychological scores (i.e. anxiety, depression, and burden) using multivariate analysis was disallowed due to attrition. This acceptable and accessible intervention provided information and support; further outcome studies are needed for a range of interventions. Short-term interventions are unlikely to affect global psychological scores, and future evaluations should include additional time points of data collection to demonstrate support during attendance. Little is known about the use of palliative care for outpatients who continue to pursue treatment of their underlying disease or whether outpatient palliative medicine consultation teams improve clinical outcomes.
                We conducted a year-long controlled trial involving 50 intervention patients and 40 control patients in a general medicine outpatient clinic. Primary care physicians referred patients with advanced congestive heart failure, chronic obstructive pulmonary disease, or cancer who had a prognosis ranging from 1 to 5 years. In the intervention group, the primary care physicians received multiple palliative care team consultations, and patients received advance care planning, psychosocial support, and family caregiver training. Clinical and health care utilization outcomes were assessed at 6 and 12 months.
                Groups were similar at baseline. Similar numbers of patients died during the study year (P =.63). After the intervention, intervention group patients had less dyspnea (P =.01) and anxiety (P =.05) and improved sleep quality (P =.05) and spiritual well-being (P =.007), but no change in pain (P =.41), depression (P =.28), quality of life (P =.43), or satisfaction with care (P =.26). Few patients received recommended analgesic or antidepressant medications. Intervention patients had decreased primary care (P =.03) and urgent care visits (P =.04) without an increase in emergency department visits, specialty clinic visits, hospitalizations, or number of days in the hospital. There were no differences in charges (P =.80).
                Consultation by a palliative medicine team led to improved patient outcomes in dyspnea, anxiety, and spiritual well-being, but failed to improve pain or depression. Palliative care for seriously ill outpatients can be effective, but barriers to implementation must be explored. Prior studies have revealed deficiencies in the care provided to patients dying from advanced medical illnesses in acute care hospitals. These deficiencies are best addressed through system change, which may include the development of clinical pathways and quality improvement models. The Palliative Care for Advanced Disease (PCAD) pathway was developed by an interdisciplinary team and includes a carepath, a daily flowsheet, and a physician order sheet with standard orders for symptom control. To evaluate the utility of PCAD, the clinical pathway was introduced on three hospital units (Oncology, Geriatrics, and an inpatient palliative care/hospice unit) as part of a quality improvement initiative and outcomes were compared to two general medical units receiving usual care. A chart audit tool (CAT) was used to review medical records of 101 patients who died on one of these five units during the year prior to implementation (baseline) and 156 who died during the nine months of the PCAD intervention. Four indices from CAT evaluated change over time: the mean number of 1) symptoms assessed, 2) problematic symptoms, 3) interventions consistent with PCAD, and 4) consultations requested. Nine of 27 (33%) patients on the Oncology/Geriatrics units and all 50 patients who died on the palliative care/hospice unit were placed on PCAD. During the PCAD intervention, dying patients who resided on Geriatrics, Oncology and palliative care/hospice units were more likely to have DNR orders than the comparison units, whereas the comparison units were more likely to use "morphine infusions" and cardiopulmonary resuscitation than the units that received the PCAD intervention. The mean number of symptoms assessed increased significantly in all units (P < 0.001 for all comparisons). The number of problematic symptoms identified (P=0.014) and the number of interventions consistent with PCAD increased only on the palliative care/hospice unit (P=0.021). The number of medical consultations declined on all units and reached significance on the Geriatrics and Oncology units (P=0.037). Although these results reflect less than one year of the PCAD intervention and must be considered preliminary, they suggest that 1) a clinical pathway such as PCAD can serve as a managerial and educational tool to improve the care of the imminently dying inpatient; 2) a PCAD clinical pathway can be implemented on hospital units as a quality improvement initiative--a "PCAD intervention;" 3) a PCAD intervention can change outcomes in a positive direction, as measured using a chart audit tool; 4) a PCAD intervention can promote aggressive symptom assessment and treatment when goals of care are aimed at comfort; and 5) changes may occur in units that do not directly receive the intervention, a phenomenon that suggests the possibility of diffusion. Further study of this systems-oriented approach to change is warranted and should include direct assessment of patient and family outcomes, as well as measures of process. The Palliative Medicine Unit at University Hospital of Trondheim, Norway, started an intervention programme that aims to enable patients to spend more time at home and die there if they prefer. Close cooperation was needed with the community health-care professionals, who acted as the principal formal caregivers, and a multidisciplinary consultant team coordinated the care. We did a cluster randomised trial to assess the intervention's effectiveness compared with conventional care
                Community health-care districts in and around Trondheim, Norway, were defined as the clusters to be randomised. We enrolled 434 patients (235 assigned intervention and 199 conventional care [controls]) in these districts who had incurable malignant disease and an expected survival of 2-9 months. Main outcomes were place of death and time spent in institutions in the last month of life.
                395 patients died. Of these, more intervention patients than controls died at home (54 [25%] vs 26 [15%], p<0.05). The time spent at home was not significantly increased, although intervention patients spent a smaller proportion of time in nursing homes in the last month of life than did controls (7.2 vs 14.6%, p<0.05). Hospital use was similar in the two groups.
                The palliative-care intervention enabled more patients to die at home. More resources for care in the home (palliative care training and staff) and an increased focus on use of nursing homes would be necessary, however, to increase time at home and reduce hospital admissions.
We found inconclusive evidence that interventions with spiritual or religious components for adults in the terminal phase of a disease may or may not enhance well-being. Such interventions are under-evaluated. All five studies identified were undertaken in the same country, and in the multi-disciplinary palliative care interventions it is unclear if all participants received support from a chaplain or a spiritual counsellor. Moreover, it is unclear in all the studies whether the participants in the comparative groups received spiritual or religious support, or both, as part of routine care or from elsewhere. The paucity of quality research indicates a need for more rigorous studies.