National Palliative Care Week 2020 – Culturally appropriate palliative care on the Tiwi Islands
Robyn Johnson, Facility Coordinator | Elizabeth Norris, Enrolled Nurse | Zoe Carmichael, Support Worker and CSO
This year’s National Palliative Care Week theme is “Palliative Care: It’s more than you think.” What is something you tell people about palliative care that surprises them?
Palliative and end of life care is not generic. Each individual is different with their needs wants and expectations. You cannot do a one-size-fits-all plan.
The best thing to do is do what the resident and family want. Talk to them discuss expectations, have a plan but make sure that plan is flexible, not set in stone. Palliative and end of life care can be made acceptable by having understanding, experienced, calm, caring and non-judgmental staff to assist with end of life care.
Tell us about your work to provide palliative care in the Northern Territory and Tiwi Islands. Are there special considerations for the culturally appropriate care of Aboriginal and Torres Strait Islander people?
Yes. Family play a major part in this. A Tiwi family is very different to what we (non-Indigenous people) consider as family. This is more complex than just blood relatives or immediate family as we know it.
Bush food plays a major role as it is considered as medicine – we as carers need to accept and embrace this. We need to facilitate the return to country at end of life and respect Aboriginal and Torres Strait Islander cultural requirements on all levels. We need to encourage family to actively participate in the care for their loved one, we need to encourage family to visit and be welcoming to them.
Also, we need to respect the person’s choice to return to family for their last days. We need to step back and forget our own cultural norms and expectations around end of life and be accepting of the cultural beliefs of others.
Palliative and End of Life Care is known for being able to adapt to challenge with creativity and compassion. Can you reflect on an instance where you had to adapt the way you provide care during the COVID-19 pandemic?
During the early parts of COVID-19 we didn’t find ourselves in this position. We now have a resident that has returned from hospital who is at end of life.
With the restrictions on visitors, we will need to be creative by moving the resident outside the gates (while ensuring their safety) of the facility to support visits with family and friends. This will allow her to have choice of who will visit and when, as well as more than one visitor, while observing social distancing.
When the time comes, we will need to facilitate her move home to family as is her wish, while also providing care if required.
What is something you have learned about the people receiving care, their loved ones, your colleagues or yourself, when thinking about how palliative and end of life care is provided during the COVID-19 pandemic?
Everyone is entitled to choose how they want to spend their last days. And we need to respect this, regardless of our own beliefs. We need to ensure that end of life is as pain free as possible and that the person is comfortable and surrounded by family.
Everyone reacts and grieves differently, and everyone should understand and be accepting of this.
What’s next for your work; what are you looking forward to?
To further my knowledge of cultural beliefs, customs, family relationships, and ensure all staff are trained to provide culturally appropriate care on Tiwi. To be able to provide and promote the end of life journey as the resident and family requests.