‘Postcode lottery’ for palliative care and dying wishes

‘I don’t want a memorial I want a memorial dinner at my favourite Chinese restaurant and it will be hilarious’ – Paul.

Good Grief is asking readers ‘What is your biggest fear about death?’ and ‘What is your biggest question about death?’

Our results so far show a common concern is about having your dying wishes met.

So we took your concerns to some health professionals and found out how they’re ensuring dying wishes are met.

Director of Supportive and Palliative Care at St Vincent’s Hospital Sydney and Prince of Wales Hospital Professor and Doctor Richard Chye has seen a lot of changes in his 28-year career in delivering dying wishes to patients.

Dr Chye has seen a shift away from purely ‘doctor driven decisions’ to the patient and family making decisions at the end of life.

But there’s another shift he champions in palliative care: a focus on living well before death.

Doctor Richard Chye has been working with palliative care patients for more than 28 years. Image supplied

‘We focus on what patients can do’

‘Our focus is on what they can do and to focus on living until death happens,’ Dr Chye explains.

He works not only with doctors and nurses but also uses diversion therapists for art and music therapy.

Art therapy he explains, is used not only as a diversion ‘but we use art therapy for patients to bring out their angst that they can’t put in words’.

There is also a biography service.

‘So your grandson who was only born yesterday can pick up that book in years to come and learn about their grandfather,’ he says.

‘We do things that make life enjoyable for the patient.

‘Even if they may not be able to do the thing for themselves, they are still worth enjoying,’ he says.

‘For example a patient who can’t get out of bed but wants to visit the Grand Canyon or Venice, we provide them with virtual reality goggles and that gives the opportunity to give them what they miss out on physically’.

Dr Chye is also working with the University of NSW to understand the importance of physical items such as a park bench or piece of art.

Currently, staff incorporate those items that can’t be brought into the hospital, via a video or image.

Image supplied by The National Cancer Institute.

How are dying wishes being met in aged care?

Aged care provider Eldercare has a specialist palliative care team to support their residents, families and employees.

Jane Pickering, Chief Executive at Eldercare says this ‘ensures residents can die well, in accordance with the values that they have lived their life by’.

‘We know that supporting people to die in their homes is what most people want,’ she says.

There is a legal mechanism to support people’s end of life wishes in the Advance Care Directive.

Chief Executive at Eldercare Jane Pickering says they also use the 7 Step Pathway program, a process for the development and implementation of a clinical care plan that documents treatment decisions relating to resuscitation and the end of life.

‘This plan is developed and completed by the doctor or nurse practitioner responsible describing the patient’s treatment and care including specific resuscitation plans, symptom control and a palliative approach to care in the context of the current clinical situation,’ Ms Pickering says.

Elsewhere, HammondCare Manager Operations and Partnerships, Palliative Care, Felicity Burns says access to palliative care is currently inequitable.

Felicity Burns, Palliative Care NSW President and HammondCare Manager Operations and Partnerships
Felicity Burns, Palliative Care NSW President and HammondCare Manager Operations and Partnerships

‘The most recent estimates are that up to 75 per cent of people dying in Australia now miss out on palliative care, and there is a “postcode lottery” in rural and remote areas that determines access,’ she says.

Hammondcare wants to advocate to improve those outcomes.

In the meantime they believe good palliative care should respect people’s needs and choices for end-of-life, including discussing with patients their goals of care and what matters most to them.

‘This can include their choices around treatment and treatment limitations as well as preferences for where they want to receive end of life care and who they would like to have involved,’ Ms Burns says.

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