The Palliative Care Forum at Parliament House on 30 October 2013 was fully booked with a further 50-70 more people who wanted to come and couldn’t get a place. It was introduced by PCNSW President, Carolyn Walsh who acknowledged the improvements which the State Government had already put in place but added that there were still problems for people to get access to palliative care. There is a need to build the specialist palliative care workforce.
Health Minister, Jillian Skinner spoke about what the government has already done for palliative care namely Home Care type packages for people in many parts of NSW and her plans to have an after hours phone line which patients and carers who are registered with a palliative care service can access. There will also be assistance to support PC volunteers in NSW. She hoped that we could all continue to work together to provide all that is required for people needing palliative care.
Dr Frank Brennan was wonderful. He simply seduced the lot of us with his poetry and prose, communicating the true feeling experienced by people facing end of life, their carers and the clinicians supporting them.
Then Jenny Gannon, who, looking after her rapidly deteriorating mother, had suffered with insufficient access to palliative care. She outlined how hard it can be with limited support to care for someone at home yet the rich rewards of doing so. The palliative care service did not have the capacity to see her mother promptly or to provide after hours support.
Sue Hanson, National Director of Palliative Care for the Little Company of Mary “We need to have better conversations about what it means to live and what it means to die”. “The earlier we start, the better.” ‘Palliative care’ means specialist palliative care…patients and families the centre of care. “We have reached a fork in the road…we can’t keep going the way we have…sustainability of the current system…ageing population, rapidly escalating demand, limited workforce, gaps in access in rural, regional and remote”.
Jane Mahony, a PC nurse from the Southern Highlands who consults into aged care and does wonderful work. She is advocating for a regular presence by palliative care nurses in every aged care facility. She has really changed the culture in the aged care facilities where she consults. She visits weekly, teaches, guides, sets things up. “Nurses and GPs in aged care feel out of their depth”.
Peter Cleasby, immediate Past President of Palliative Care NSW talked about palliative care in acute care settings and put forth the idea of a ‘dying friendly’ hospital, where palliative care is seen as a valid option, rather than a last resort.
“Palliative care is about attitude, not architecture.”
The Dying Friendly Hospital is committed to, and demonstrates, best clinical practice in the care of the dying. This also includes diagnosis of dying and differentiating it from reversible clinical deterioration. After around fifty years of the modern hospice movement there is ample evidence and consensus on best practice in palliative and end of life care. It remains puzzling why this is still not universally recognised by a range health care professionals.
Ruth Jones, Director of Cancer and Palliative Care in Western NSW LHD said that in rural NSW the small workforce is unable to meet the demand. There is no budget for succession planning. They operate 8.30 am to 5 pm only. There is little allied health. Need for more input from palliative medicine specialists. Also volunteer coordinators and better use of Telehealth. GPs do few home visits, provide limited after hours support. There is a great need for better access to medications & access to IT to allow data to be collected.
Tony Ireland, Palliative physician and data analyst: Discussed the factors associated with likelihood of accessing PC in hospitals The impact of PC access upon length of stay, transfer to ICU and costs.
Palliative care needs a name change. Palliative care is ‘good care at the end of a life’
Shadow Minister for Health, Dr Andrew McDonald shares his optimism for the future as the only MP who is also a medico.
“Many undergraduate medical students – right now – want to get into pall care. This is our once-in-a-generation opportunity.”
The open forum at the end was excellent
We need to have better conversations about what it means to live and what it means to die.
Q1: If you had one wish for palliative care, what would it be?:
Ruth Jones: More workforce, better cooperation from GPs.
Sue Hanson: All parts of the system have to work and all to have an understanding of the relationship with the different parts of the workforce.
Jane Mahony: To have PC work alongside the aged care staff.
Tony Ireland: A formal period of education and exposure in PC for all young graduates.
Peter Cleasby: Respect – that other health professionals will respect the skill, expertise and role of Palliative Care services, and that palliative care services would increase their respect for other health professionals as we all work together to deliver more of the right care more often.
Some really good discussion on the floor – from eHealth solutions in rural and remote areas, advocacy among young people, to changing the public discourse around end of life issues.