Why do we find it so difficult to talk about dying? A question that palliative care specialists, such as Scott Murray and Kirsty Boyd, have been asking ever more urgently as populations age and the need for a good death (after a healthy life) moves higher up the healthcare agenda. It’s not hard to find evidence of the problem: partners not discussing each other’s preferences for care at the end of life, doctors not discussing the same with patients, everyone failing to record their own wishes for future reference, and patients with life limiting illnesses still dying a medicalised death in hospital as a result.
Public awareness campaigns may help to encourage these difficult conversations at home and in clinics, surgeries, and hospital wards. But health professionals need specific training too, Murray and Boyd write, offering a helpful box of opening questions to get us started.
While dying well is everyone’s business, most of us look to palliative care services to help achieve it. Traditionally based in hospitals and hospices, these services are shifting their focus to people’s homes, where they control symptoms, coordinate care, and improve the quality of the final days and weeks of life.
A new study from Canada suggests that community based services can also keep people out of hospital during their final illness, and help them die at home. This matters to patients and their families, but it also matters to providers, commissioners, and funders of health services, writes Fliss Murtagh in her linked Editorial. Could specialist palliative care services based in the community improve the universal experience of dying, and relieve pressure on hospitals at the same time? It looks very much like it, she concludes.
Elsewhere, The BMJ is keeping up the pressure on the European Medicines Agency (EMA) to rethink controversial plans, which restrict public access to important clinical trial data about drugs. In an open letter to Guido Rasi, the regulator’s director, leading voices from the All Trials campaign urge the EMA to lift the new restrictions or “risk losing the trust of patients and healthcare professionals.” The EMA meets to discuss “transparency” proposals on 12 June.
Read what all this has to do with the Protestant Reformation in 16th century Europe in a blog by one of the letter’s signatories. Richard Lehman has a warning for today’s medical reformers campaigning for open data and “dependable, real time, patient relevant evidence, which is brought to bear through effective shared decision making.” Stick together, he writes, and do not squabble or things could get very messy indeed.
Alison Tonks is an associate editor, The BMJ.