Issues and needs in end-of-life decision making: an international modified Delphi study.

BACKGROUND: end-of-life decision making is an important aspect of end-of-life care that can have a significant impact on the process of dying and patients' comfort in the last days of life. AIM: the aim of our study was to identify issues and considerations in end-of-life decision making, and needs for more evidence among palliative care experts, across countries and professions. PARTICIPANTS: 90 palliative care experts from nine countries participated in a modified Delphi study. Participants were asked to identify important issues and considerations in end-of-life decision making and to rate the need for more evidence. RESULTS: experts mentioned 219 issues in end-of-life decision making related to the medical domain, 122 issues related to the patient wishes and 92 related to relatives' wishes, regardless of profession or country (p > 0.05). In accordance, more than 90% of the experts rated the comfort and wishes of the patient and the potential futility of treatment as important considerations in end-of-life decision making, although some variation was present. When asked about issues that are in need of more evidence, 87% mentioned appropriate indications for using sedatives and effects of artificial hydration at the end of life. A total of 83% mentioned adequate communication approaches. CONCLUSIONS: palliative care experts from different professions in different countries encounter similar issues in end-of-life decision making. Adequate communication about these issues is universally experienced as a challenge, which might benefit from increased knowledge. This shared experience enables and emphasizes the need for more international research.

Renal failure and specialist palliative care: an assessment of current referral practice.

AIMS: This retrospective audit assessed the referral practice for patients with end-stage renal failure from the nephrology service to the specialist palliative care team in a large teaching hospital in the north-west of England. METHODS: Forty-nine referrals with 'renal' as a primary diagnosis over a two-year period were identified from referral data. General and palliative care notes were reviewed and a data collection tool was designed. RESULTS: Most common reasons for referral were for 'placement' (38.6%) and 'dying/distressed' patients (22.7%), although psychological support was also prevalent (15.9%). Renal teams discussed stopping dialysis in the majority of cases (89%), but documented preferred place of care less frequently (48.3%) and achieved discharge to these locations in less than half of cases (21.4%). CONCLUSION: There was well-established referral practice between the renal and the specialist palliative care team at the hospital examined. The renal team appropriately referred for symptom control and support in the dying phase of patients. There are issues surrounding placement and increased implementation of end-of-life care tools, including the Liverpool Care Pathway, Gold Standards Framework and Preferred Place of Care documentation for renal patients, which needs to be an ongoing priority.

Developing the Liverpool Care Pathway for the dying child.

In most western societies the death of a child is a rare occurrence. When it does occur, it typically takes place after a period of intensive and often prolonged treatment. In light of the relative infrequency of these events in clinical practice, ensuring that all dying children and their families receive consistent and appropriate care remains a challenge. A retrospective audit of documentation of care for dying children in two paediatric units in the north-west of England illustrated that the care provided was not always documented consistently. This paper highlights work currently underway to develop an integrated care pathway for the care of the dying child based on the Liverpool Care Pathway (LCP). The aim of this work is to facilitate the delivery and recording of optimum care for all dying children and their families.

The prevalence, key causes and management of insomnia in palliative care patients.

In a prospective audit, the prevalence, key causes and treatment of insomnia prior to admission were evaluated in a population of hospice patients using a questionnaire based on a review article of key features related to insomnia in the palliative care setting. Seventy-four patients completed the questionnaire. Fifty-two (70%) patients had insomnia symptoms. Uncontrolled physical symptoms, most often pain (15 patients), were the commonest cause of insomnia, cited by 31 (60%) sleep-disturbed patients. Thirteen (62%) of 21 patients who had been prescribed hypnotic medication reported an improvement with the prescribed medication. Twenty (38%) of the 52 patients with insomnia suggested that improved symptom control would improve their sleep, and only two (4%) suggested the need for more hypnotic medication. We conclude that insomnia is a common symptom in terminally ill patients and that improved symptom control should be a priority in the management of insomnia in this group of patients.