‘Assisted Dying’: A View of the Legal, Social, Ethical and Clinical Perspectives

Discussion of legislation of physician-assisted suicide and euthanasia, often euphemistically called ‘assisted dying’, frequently focuses on individual cases promoted by campaigners as the reason that the law to licence doctors to supply lethal drugs to patients requesting them should change under certain conditions. But such legislation has wider consequences that simply for a handful of cases, as the relentlessly increasing numbers of such deaths have shown

Talk CPR - a technology project to improve communication in do not attempt cardiopulmonary resuscitation decisions in palliative illness

Background A national Do Not Attempt Cardiopulmonary Resuscitation policy was rolled out for the National Health Service in Wales in 2015. A national steering group led on producing information videos and a website for patients, carers and healthcare professionals, forming part of a quality improvement program. Videos were planned, scripted and produced with healthcare professionals and patient/carer representatives, and were completed with both English and Welsh language versions. The TalkCPR videos encourage and promote open discussion about Cardiopulmonary Resuscitation (CPR) and DNACPR in palliative care situations. Methods We worked with patient/carer groups to evaluate whether video resources to convey the salient facts involved in CPR and DNACPR decisions for people with palliative and life-limiting illness were acceptable or not. We conducted a mixed-method design service review in five phases to evaluate whether this technological resource could help. After creating video and website materials, they were evaluated by doctors, nurses and a patient/carer group. We also sent out one lightweight TalkCPR video media pad to each practice in Wales. These rechargeable electronic video media pads had communication videos pre-loaded for easy viewing, especially in areas with poor roaming data coverage. Results Videos were demonstrably acceptable to both patient and carer groups, and improved healthcare professional confidence and understanding. Videos went live on the TalkCPR website, in all Welsh Health Boards and on Youtube, and are now used in routine practice throughout Wales. Conclusion This is the first time that DNACPR information videos are aimed directly at palliative care patients and carers, to explore this sensitive subject with them, and to encourage them to approach their doctor or nurse about it. The website, app and video media pads were developed by patients, the Digital Legacy Association, Welsh NHS IT services, Welsh Government, the Bevan Commission and the Dying Matters Charity in Wales ‘Byw Nawr’. The GMC, the Royal College of General Practitioners and NICE have listed TalkCPR as a learning resource. There has also been a collaboration with Falmouth University Art College, who helped produce graphic designs to facilitate and encourage discussions about CPR and end of life care

Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study

Background In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users’ expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design. Methods Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically. Results Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients’ experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions. Conclusions Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision

Developing a template to plan palliative care services: the Welsh experience

Much specialist palliative care in the U.K. is provided through the voluntary sector, with funding in part from the National Health Service and the remainder from donations. Service development has been ad hoc to date. In Wales, with a population of just under three million, the Minister has allocated specific ring fenced funding for the voluntary sector, to ensure that there is equity of evidence-based care provision. To do this, a formula has been developed to meet the specialist palliative care needs across Wales, appropriate to both urban and rural settings, for populations of all ages and to take into account the requirements for hospital support teams and those working in cancer centers. In addition, where hospice inpatient beds exist, a funding formula has been developed to guide reimbursement for basic care costs. Where there are no beds, hospice-at-home provision provides an alternative model of care, with funding adjusted pro rata. The formula aims to ensure fairness of specialist palliative care provision, available out of hours as well as during the working day, providing patient-focused evidence-based care. This means that the specialist team must meet specialist education standards, act as a resource to generalist teams and use a core clinical data set to allow comparable audits against agreed all-Wales standards