"Politicians are scared to talk about end of life care", Sarah Wootton told delegates at the Labour Party conference.
Wootton, the Chief Executive of Dignity in Dying and Compassion in Dying, explained how the two organisations were founded on the principle that patients’ choices at the end of life were respected.
Compassion in Dyingworked to provide people at the end of life with the advice and support needed to make sure their wishes under the current law were properly recorded and respected by healthcare professionals, whilst
Dignity in Dyingwished to expand the range of choices to include assisted dying for the terminally ill.
She noted that end of life care was one of the more “paternalistic” areas of health and social care, with doctors still dictating what was best for the patient. Dignity in Dying sought to change that decision making model, by placing choice and control in the hands of the individual.
Wootton added that the fallout from the Liverpool Care Pathway demonstrated what could happen when patients’ choices were not listened to and when communication between patient and provider failed.
Wootton expressed disappointment at the lack of uptake in the current patient preference tools available – advanced decisions and the lasting powers of attorney for health and welfare – with only 1 in 25 having formally recorded their wishes using one of these tools. She highlighted a lack of awareness amongst both patients and healthcare professionals, but welcomed the report of the House of Lords Mental Capacity Act Committee that encouraged wider use of both advance decisions and lasting powers of attorney.
But she noted that one major concern amongst patients was that advance decisions were not recorded centrally, leading to healthcare professionals ignoring or being unaware of their existence at the most critical times.
Finally, Wootton welcomed the Government’s partnership with the National Council for Palliative Care to consult on the range of end-of-life choices. But she said it felt as if policy makers were picking and choosing the easier choices that should be available, rather than looking holistically at all options desired by patients, including that of assisted dying.
Overall, whilst there was still some way to go, she stated that the direction of travel in policy terms was “encouraging”.
Preth Rao, head of policy and campaigns at Sue Ryderstated at the outset that the charity took a neutral position on assisted dying.
She outlined the findings of a recent Sue Ryder / Demos survey which found that the top priority for people in relation to end of life care was that they were pain free. Being surrounded by loved ones; privacy and dignity as well as familiar surroundings also featured high on the list.
Rao added that there was currently a conflict between the choices available to those at the end of life and the actual preferences of patients. Services needed to be reconstructed around these preferences.
The choices available had to be adaptable for different patients and different needs, and Rao called for more nuance and more information for the public on end of life care. Patients had to be able to change their mind half way through the end of life process.
Localism had made the delivery of end of life care more complicated, with the type of care available differing in each locality, she added.
She suggested that the 2008 End of Life care Strategy needed to be refreshed to incorporate the five principles of care following the Liverpool Care Pathway controversy.
Rotherham MP and chair of the APPG on Choice at the End of Life, Sarah Championbegan by saying that no-one in the 21st century should have a bad death and that the policy focus had to be on providing choice.
Part of that choice was assisted dying and she welcomed the progress of Lord Falconer’s Assisted Dying Bill through the House of Lords. She later pointed to the increased public awareness of the issue, as seen in a recent Coronation Street headline and The Sun’s front-page campaign to legalise assisted dying.
“The public need and want us to take action”, she said.
Regarding the Liverpool Care Pathway, Champion argued that the Government had taken a “knee-jerk” decision to remove the pathway without establishing a replacement service, as it had demonstrated good practice in the vast majority of cases in the past.
Champion presented a series of recommendations that would improve the provision of end-of-life care that had resulted from her consultation with local and national stakeholders. These included the creation of a palliative care minister; putting systems in place to allow real-time feedback between providers, patients and their families; mandatory training for professionals who work in palliative care; increased funding for research into end of life care and increased integration and partnership between the multiple agencies involved in providing palliative care.
She concluded by agreeing that politicians were scared to talk about end of life, as the morbidity and sensitivity of the subject “did not win votes”. This attitude had to change, she said.