2 March 2021

Advanced Care Planning MND workshop

Advance care planning was the theme of a recent interactive workshop for people with motor neurone disease (MND), their families and health care professionals. Over seventy people attended, mainly MND families and health professionals, including MND advisors.

The aim of the free “Plan Ahead” workshop held at Floreat last month was to inform people diagnosed with this severe and rapidly progressive neurodegenerative disease, and their carers, about decisions that will need to be made in relation to end-of-life care.

Topics discussed were: what matters most to you in life; what treatments do you want or don’t want at the end of life; and who will make decisions when you can’t.

The workshop provided information on how individuals with MND can let families and health care providers know their preferences in terms of treatments. This included discussion on how to develop and formalise an Advance Care Plan and Advance Health Directive.

Some of the key points about voluntary assisted dying were also discussed. Western Australia has passed legislation which enables voluntary assisted dying to become a choice available to people from mid-2021. Also discussed was the importance of having conversations and sharing documentation with family, friends and GP, and completing enduring power of attorney and guardianship legal processes.

All attendees said they would recommend the workshop to family and friends. The percentage feeling confident/very confident in completing the advance care planning documents rose from 18.8% before the workshop to 67.4% at the conclusion.

Some feedback on the benefits of the workshop included: “I wasn’t very aware of advanced care planning, so I have found this workshop very informative and will make a start and talk to my family about end of life wishes”; “Changes way of thinking – empowerment – assessing values now and in future”; “Information on what is out there to help with making decisions”.

Presenters included Lana Glogowski, CEO of Palliative Care WA, Sabena Lund, Community Education and Projects Officer Palliative Care WA, and Samar Aoun, Professor of Palliative Care at the Perron Institute and La Trobe University.

Useful resources were provided, including an initiative led by MND Australia titled: ‘End of life care: a guide for people living with MND’. State and Territories contributed to the practical, plain language evidence-based advice which was launched this month.

The workshop, hosted by the Motor Neurone Disease Association of WA, was delivered by Palliative Care WA and supported by the Western Australian Department of Health’s WA Cancer and Palliative Care Network and the Perron Institute.

For more information from Palliative Care Western Australia, email: sabena.lund@palliativecarewa.asn.au.