The meaning of advance directives in the lives of people with advanced long term conditions

Background: Socio demographic and epidemiological change, together with the availability of medical technology, may prolong the process of dying. Antecedent control over end-of-life care (EoLC) may be sought by making an advance directive (AD). This option has been legalised in some countries including Israel, the setting of this study. In Israel, EoLC is set in the context of complex and interrelated religious and state regulations. Aim: To examine from a variety of perspectives, the experiences, beliefs and practices associated with the use of ADs in Israel, with a view to understand their role in the lives of patients with palliative care needs towards the EoL. Methods: The study was conducted in 2011, using mixed methods in two phases. The first phase involved qualitative methods to construct patient-centred case studies. Twenty seven participants (patients, relatives, physicians and a Rabbi) were interviewed. In phase 2, a survey examined health care providers’ (HCP) knowledge, attitudes and experiences regarding ADs. The final sample (n=72) of HCPs comprised: 57 nurses (79%), 8 physicians (11%), and 7 social workers (10%). Findings: This study promotes the understanding that ADs reflect a multitude of steps that are distinct but linked, as in a ‘relay’. The findings demonstrate complexity: patients’ ADs reflected their desire for autonomy but their decisions were often influenced by their relationships. In turn, relatives feared making mistakes in decision-making, while also feeling obligated to enact the patient’s wishes. Physicians reported finding it difficult to forgo active treatments and found communication with relatives about patients’ ADs challenging. The survey showed that while HCPs had typically positive attitudes towards, and some experience with ADs, they also perceived some barriers towards their use. Conclusion: ADs seem as an imperfect solution to the complexities surrounding EoLC planning, and additional solutions than those available today may be required

The meaning of advance directives in the lives of people with advanced long term conditions

Background: Socio demographic and epidemiological change, together with the availability of medical technology, may prolong the process of dying. Antecedent control over end-of-life care (EoLC) may be sought by making an advance directive (AD). This option has been legalised in some countries including Israel, the setting of this study. In Israel, EoLC is set in the context of complex and interrelated religious and state regulations. Aim: To examine from a variety of perspectives, the experiences, beliefs and practices associated with the use of ADs in Israel, with a view to understand their role in the lives of patients with palliative care needs towards the EoL. Methods: The study was conducted in 2011, using mixed methods in two phases. The first phase involved qualitative methods to construct patient-centred case studies. Twenty seven participants (patients, relatives, physicians and a Rabbi) were interviewed. In phase 2, a survey examined health care providers’ (HCP) knowledge, attitudes and experiences regarding ADs. The final sample (n=72) of HCPs comprised: 57 nurses (79%), 8 physicians (11%), and 7 social workers (10%). Findings: This study promotes the understanding that ADs reflect a multitude of steps that are distinct but linked, as in a ‘relay’. The findings demonstrate complexity: patients’ ADs reflected their desire for autonomy but their decisions were often influenced by their relationships. In turn, relatives feared making mistakes in decision-making, while also feeling obligated to enact the patient’s wishes. Physicians reported finding it difficult to forgo active treatments and found communication with relatives about patients’ ADs challenging. The survey showed that while HCPs had typically positive attitudes towards, and some experience with ADs, they also perceived some barriers towards their use. Conclusion: ADs seem as an imperfect solution to the complexities surrounding EoLC planning, and additional solutions than those available today may be required

Coeliac plexus radiosurgery for pain management in patients with advanced cancer : study protocol for a phase II clinical trial

Introduction: Pancreatic cancer is characterised by severe mid-back and epigastric pain caused by tumour invasion of the coeliac nerve plexus. This pain is often poorly managed with standard treatments. This clinical trial investigates a novel approach in which high-dose radiation (radiosurgery) is targeted to the retroperitoneal coeliac plexus nerve bundle. Preliminary results from a single institution pilot trial are promising: pain relief is substantial and side effects minimal. The goals of this study are to validate these findings in an international multisetting, and investigate the impact on quality of life and functional status among patients with terminal cancer. Methods and analysis: A single-arm prospective phase II clinical trial. Eligible patients are required to have severe coeliac pain of at least five on the 11-point BPI average pain scale and Eastern Cooperative Oncology Group performance status of two or better. Non-pancreatic cancers invading the coeliac plexus are also eligible. The intervention involves irradiating the coeliac plexus using a single fraction of 25 Gy. The primary endpoint is the complete or partial pain response at 3 weeks. Secondary endpoints include pain at 6 weeks, analgesic use, hope, qualitative of life, caregiver burden and functional outcomes, all measured using validated instruments. The protocol is expected to open at a number of cancer centres across the globe, and a quality assurance programme is included. The protocol requires that 90 evaluable patients be accrued, based upon the assumption that a third of patients are non-evaluable (e.g. due to death prior to 3-weeks post-treatment assessment, or spontaneous improvement of pain pre-treatment), it is estimated that a total of 120 patients will need to be accrued. Supported by Gateway for Cancer Research and the Israel Cancer Association. Ethics and dissemination: Ethic approval for this study has been obtained at eight academic medical centres located across the Middle East, North America and Europe. Results will be disseminated through conference presentations and peer-reviewed publications. Trial registration number: NCT03323489