Establishing a multicentre clinical research network: lessons learned.

BACKGROUND: Within many health care disciplines, research networks have emerged to connect researchers who are physically separated, to facilitate sharing of expertise and resources, and to exchange valuable skills. A multicentre research network committed to studying difficult cancer pain problems was launched in 2004 as part of a Canadian initiative to increase palliative and end-of-life care research capacity. Funding was received for 5 years to support network activities. METHODS: Mid-way through the 5-year granting period, an external review panel provided a formal mid-grant evaluation. Concurrently, an internal evaluation of the network by survey of its members was conducted. Based on feedback from both evaluations and on a review of the literature, we identified several components believed to be relevant to the development of a successful clinical cancer research network. RESULTS: THESE COMMON ELEMENTS OF SUCCESSFUL CLINICAL CANCER RESEARCH NETWORKS WERE IDENTIFIED: shared vision, formal governance policies and terms of reference, infrastructure support, regular and effective communication, an accountability framework, a succession planning strategy to address membership change over time, multiple strategies to engage network members, regular review of goals and timelines, and a balance between structure and creativity. CONCLUSIONS: In establishing and conducting a multi-year, multicentre clinical cancer research network, network members were led to reflect on the factors that contributed most to the achievement of network goals. Several specific factors were identified that seemed to be highly relevant in promoting success. These observations are presented to foster further discussion on the successful design and operation of research networks.

Global warming in the palliative care research environment: adapting to change.

Advocates of palliative care research have often described the cold and difficult environment that has constrained the development of research internationally. The development of palliative care research has been slow over the last few decades and has met with resistance and sometimes hostility to the idea of conducting research in 'vulnerable populations'. The seeds of advocacy for research can be found in palliative care literature from the 1980s and early 1990s. Although we have much to do, we need to recognize that palliative care research development has come a long way. Of particular note is the development of well-funded collaboratives that now exist in Europe, Canada, Australia and the USA. The European Association for Palliative Care and the International Association for Hospice and Palliative Care has recognized the need to develop and promote global research initiatives, with a special focus on developing countries. Time is needed to develop good research evidence and in a more complex healthcare environment takes increasingly more resources to be productive. The increased support (global warming) evident in the increased funding opportunities available to palliative care researchers in a number of countries brings both benefits and challenges. There is evidence that the advocacy of individuals such as Kathleen Foley, Neil MacDonald, Balfour Mount, Vittorio Ventafridda, Robert Twycross and Geoff Hanks is now providing fertile ground and a much friendlier environment for a new generation of interdisciplinary palliative care research. We have achieved many of the goals necessary to avoid failure of the 'palliative care experiment', and need to accept the challenge of our present climate and adapt and take advantage of the change.

Location of death in Canada. A comparison of 20th-century hospital and nonhospital locations of death and corresponding population trends.

This report compares 20th-century Canadian hospital and nonhospital location-of-death trends and corresponding population mortality trends. One of the chief findings is a hospitalization-of-death trend, with deaths in hospital peaking in 1994 at 80.5% of all deaths. The rise in hospitalization was more pronounced in the years prior to the development of a national health care program (1966). Another key finding is a gradual reduction since 1994 in hospital deaths, with this reduction occurring across all sociodemographic variables. This suggests nonhospital care options are needed to support what may be an ongoing shift away from hospitalized death and dying.

Amputation and the prevention of phantom pain.

Although it has been proposed that preoperative analgesia with epidural administration of analgesics may prevent long-term phantom pain, published results to date have been contradictory and controversial. In this case report, we describe a 41-year-old man with local recurrence of squamous cell carcinoma of the anus who underwent a hemipelvectomy. Preoperatively he had a significant neuropathic pain syndrome requiring oxycodone 60 mg every 4 hours. An epidural infusion of morphine and bupivacaine was started 24 hours preoperatively and discontinued on the third postoperative day. Over the next 10 days the oxycodone was gradually decreased and eventually discontinued prior to discharge. A review of the literature reveals conflicting reports on the benefit of preoperative epidural pain management in the prevention of postoperative pain syndromes. Conflicting research and conclusions of commentators leaves unanswered questions for clinicians. Nevertheless, we do know that we need to provide the best pain relief for patients both before and after amputation. This may require a combination of the oral, subcutaneous or intravenous, and epidural routes.

A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients.

The issue of symptom management at the end of life and the need to use sedation has become a controversial topic. This debate has been intensified by the suggestion that sedation may correlate with 'slow euthanasia'. The need to have more facts and less anecdote was a motivating factor in this multicentre study. Four palliative care programmes in Israel, South Africa, and Spain agreed to participate. The target population was palliative care patients in an inpatient setting. Information was collected on demographics, major symptom distress, and intent and need to use sedatives in the last week of life. Further data on level of consciousness, adequacy of symptom control, and opioids and psychotropic agents used during the final week of life was recorded. As the final week of life can be difficult to predict, treating physicians were asked to complete the data at the time of death. The data available for analysis included 100 patients each from Israel and Madrid, 94 patients from Durban, and 93 patients from Cape Town. More than 90% of patients required medical management for pain, dyspnoea, delirium and/or nausea in the final week of life. The intent to sedate varied from 15% to 36%, with delirium being the most common problem requiring sedation. There were variations in the need to sedate patients for dyspnoea, and existential and family distress. Midazolam was the most common medication prescribed to achieve sedation. The diversity in symptom distress, intent to sedate and use of sedatives, provides further knowledge in characterizing and describing the use of deliberate pharmacological sedation for problematic symptoms at the end of life. The international nature of the patient population studied enhances our understanding of potential differences in definition of symptom issues, variation of clinical practice, and cultural and psychosocial influences.

Sedation for delirium and other symptoms in terminally ill patients in Edmonton.

The use of sedation and the management of delirium and other difficult symptoms in terminally ill patients in Edmonton has been reported previously. The focus of this study was to assess the prevalence in the Edmonton region of difficult symptoms requiring sedation at the end of life. Data were collected for 50 consecutive patients at each of (a) the tertiary palliative care unit, (b) the consulting palliative care program at the Royal Alexandra Hospital (acute care), and (c) three hospice inpatient units in the city. Patients on the tertiary palliative care unit were significantly younger. Assessments confirmed the more problematic physical and psychosocial issues of patients in the tertiary palliative care unit. These patients had more difficult pain syndromes and required significantly higher doses of daily opioids. Approximately 80% of patients in all three settings developed delirium prior to death. Pharmacological management of this problem was needed by 40% in the acute care setting, and by 80% in the tertiary palliative care unit. The patients sedated varied from 4% in the hospice setting to 10% in the tertiary palliative care unit. Of the 150 patients, nine were sedated for delirium, one for dyspnea. The prevalence of delirium and other symptoms requiring sedation in our area is relatively low compared to others reported in the literature. Demographic variability between the three Edmonton settings highlights the need for caution in comparing results of different palliative care groups. It is possible that some variability in the use of sedation internationally is due to cultural differences. The infrequent deliberate use of sedation in Edmonton suggests that improved management has resulted in fewer distressing symptoms at the end of life. This is of benefit to patients and to family members who are with them during this time.

Home versus hospice inpatient care: discharge characteristics of palliative care patients in an acute care hospital.

This prospective survey was initiated to identify factors that helped and hindered home discharge for 100 consecutive patients who did not require further specialist palliative or acute care. Information was collected on demographics, functional ability (using the Palliative Performance Scale [PPS] and Karnofsky Performance Scale [KPS]), cognitive function at discharge as measured by the Mini-Mental State Examination (MMSE), home support circumstances, and patient and family preference for discharge. 59 patients were discharged home and 41 were transferred to a hospice. Younger patients with younger caregivers were discharged home more often. Patients with better MMSE and better functional ability (PPS and KPS) were also more likely to go home. Patients going home were more likely to be married. Preference for site of discharge was met for 76% of patients and 90% of families. Of the patients going to a hospice, 24% of patients and 7% of families preferred a home discharge. More physical support at home could have facilitated a home discharge for 13 patients. Functionally dependent and cognitively impaired patients were generally unable to return home. To support patients and their families in an environment of their choice, access to increased physical support in the home must be addressed.

Sedation for uncontrolled symptoms in a South African hospice.

The need to sedate terminally ill patients for uncontrolled symptoms has been previously documented in a few reports. A retrospective consecutive chart review was undertaken at a hospice in Cape Town, South Africa, to develop an understanding of the local experience and assess the potential for improved patient management. Twenty-three of seventy-six (30%) patients received sedating therapies: twenty patients for delirium, two patients for delirium and dyspnea, and one patient for dyspnea alone. Fourteen patients were sedated with a continuous subcutaneous infusion of midazolam, seven patients with intermittent doses of benzodiazepines, and two patients with chlorpromazine and lorazepam. The mean midazolam dose was 29 mg per day (median 30 mg; range 15-60 mg per day). Patients were sedated on average 2.5 days before death (median 1 day; range 4 hours-12 days). The mean equivalent daily dose of parenteral morphine in the last week of life showed a significantly higher mean for the sedated group, as compared to the nonsedated group. There was minimal investigation of reversible causes for delirium, none of the patients underwent an opioid rotation, and the opioid dose was seldom decreased. None of the patients received parenteral hydration. The prevalence for the use of sedating treatment is consistent with the range of other literature reports. Nevertheless, the wide disparity in the reported prevalence of these problems, and the ethical concerns raised by the relative frequency of this sedative approach, cannot be ignored.

Innovative palliative care in Edmonton.

PROBLEM BEING ADDRESSED: Access to palliative care in Edmonton has been hampered by uneven development, poor distribution of services, and more recently, economic restraints. Family physicians' involvement in palliative care has been hindered by the variety of access points, poor coordination, and inadequate reimbursement for time-consuming and difficult patient care situations. OBJECTIVE OF PROGRAM: To provide high-quality palliative care throughout Edmonton in all settings, with patients able to move easily throughout the components of the program; to lower costs by having fewer palliative care patients die in acute care facilities; and to ensure that family physicians receive support to care for most patients at home or in palliative care units. MAIN COMPONENTS OF PROGRAM: The program includes a regional office, home care, and consultant teams. A specialized 14-bed palliative care unit provides acute care. Family physicians are the primary caregivers in the 56 palliative continuing care unit beds. CONCLUSIONS: This program appears to meet most of the need for palliative care in Edmonton. Family physicians, with support from consulting teams, have a central role. Evaluation is ongoing; an important issue is how best to support patients dying at home.