Dying, and death, is still very difficult to speak about whether it is our own passing, that of a loved one or a tragedy in our community.
It brings all our emotions to the surface, including enormous grief.
Compassionate communities are communities where everybody recognises that we all have a role to play in supporting each other in times of loss, ageing, dying and grief. Where everyone is ready, willing and confident to have those hard to broach discussions with our family and friends, and to support each other in emotional and practical ways. Where we recognise that all-natural cycles of sickness and health, birth and death, and love and loss occur every day, and that care for one another at times of crisis and loss is not a task solely for health and social services.
It is everyone’s business – remember the village?
Queensland Compassionate Communities is a component of Palliative Care Queensland which has been developed to work with communities to nurture and promote compassion, and I have shared via Facebook about their incredible work.
This includes guidance through a consultancy service, delivering public education programs such as PalliLearn and Last Aid, in amongst overseeing and running programs, projects and activities on the ground. They create awareness initiatives which promote and develop understanding about what compassionate communities are, as well provide guidance to government policy.
Our community is definitely a compassionate community, and we are fortunate to have Sunshine Coasters such as Gillian Hall working tirelessly in this space, whom I first met four years ago when the Compassionate Communities project was launched on the Sunshine Coast as part of a national research project. From this, a small group of residents who wanted to work on a tangible project to build caring communities, resulted in start-up, not-for-profit funeral business as a contribution to addressing local needs, and we also have our first ecofriendly burials at Eumundi, though I have been told a tracker is needed to locate our loved ones so I must update my technological capabilities!
One of the most difficult aspects for an MP is to talk about is the cost of death, as it may be seen as insensitive.
Death, as with birth and our life in between, has costs associated that must be advocated for to State and Federal Governments, which means we, as MPs, have no choice but to talk about it.
For many in our community, there is a preference in their last day to passing in a hospital. There are also many that wish to be in their own bed, with the smells and sounds they are familiar with, beloved family, friends and pets by their side.
Sometimes this is not possible for a multitude of reasons. Our house cannot be retrofitted in time, access for palliative outreach services is difficult, or we do not have someone who can stay with us and care for us in our last days.
That is where our incredible palliative care hospices come in, such our as very own and much-loved Katie Rose Hospice
For those unfamiliar, Katie is our home away from home in our last days. A wonderful light filled house surrounded by gardens, with the smell of baking treats, the sounds of visiting grandchildren, love from volunteers and specialist palliative care nurses.
Somewhere that, 24/7, you are the focus as a much-treasured guest, not a patient, a number or statistic. Your last days are filled with what we all would want for everyone. That our death, just as our birth and life, is a progression, not traumatic for our loved ones, however, filled with loved ones. A transition that every single one of us will go through, and there should be choice in this journey.
I have fought for Katie Rose on many fronts successfully.
First as a new MP to get the funding so they could be accredited to be able to apply for state funding, and $100,000 later, this was achieved. Then to get the state funding, which thankfully was achieved and happily, we are now on the second round, with a new four-year-contract received.
However, I am still fighting, five years on, for a sustainable funding model for not only Katie Rose, but all hospices in Queensland.
This has not been easy as hospices, even though very much part of palliative care across the world, are relatively new in Australia.
Queensland has the most of any state with seven, other states may have one or two which are operating without any government funding. It is up to again, incredible volunteers, to raise operating costs through such initiatives as Op Shops, bequeathments, and donations from appreciative families of those who have passed in their loving care.
Hospices are in high demand, and low in numbers. They are an essential and needed component of our palliative care, and as such should be appropriately funded.
With a hospital bed costing triple to what a hospice bed does, our desperate shortage of hospital beds and reports that passing in a hospice is less traumatic, more supportive and a key element in recovery through the grieving process for loved ones, whether it is for a grandparent, or a child, hospices are wanted and needed.
With all of this known, I still cannot comprehend why requests to our governments for a sustainable funding model continues to not be addressed.
The inquiry into palliative care, and ensuing 2019 Queensland Health Palliative Care Services Review, highlighted many issues. These included a lack of hospices, respite facilities, afterhours care, and residential care. The knowns were articulated – that demand is outstripping supply, which requires greater investment in service delivery by Australian and State Governments.
Even with $17 million committed by the QLD Government, this will not be able to address the reality we are faced with.
There remains insufficient resources to allow Queenslanders the choice to pass at home, with increased access desperately needed to hospice facilities and other home-like residential environments at end-of-life, in addition to dedicated hospital and hospice palliative care beds.
Queensland should become a leader in compassionate communities, however, to do that, we need to listen to what Queenslanders wish for the end of their days. And that includes hospices, such as Katie Rose, to be an option.
As I recently spoke about in Parliament, they need more that the current 21 per cent funding for nursing costs. With these not for profits still experiencing the fallout from the pandemic including loss of income through fundraisers not being able to be held, and increases in nursing and Covid related costs, it is time for Queensland to move into a space where death and dying is not a cost we need to be on our knees begging for or sausage sizzling over, just as for our birth, or life.
However, that is what I am now doing, pleading for what should not need to be pleaded for on behalf of our community and across Queensland. The right for to pass with dignity, in the space of their choosing, with all they love around, including their furry family members.
