A palliative care provider is spreading awareness around community-based end-of-life services and highlighting the special role of spiritual care.
Chief executive of palliative hospice provider Karuna, Tracey Porst, says spiritual issues may often come into focus when we or someone close to us is faced with a life threatening illness or death.
The not-for-profit organisation based in Queensland believes in providing spiritual care and is guided by Buddhist principles.
"Having a conversation about the inevitable is helpful to the patient, but also the carers and families," she says.
"When that service is deeply personalised and profound, it enables people to live well while they are."
Tracy also says in-home palliative care can help lift the weight off hospitals' shoulders by freeing up beds.
"There's a lot of potential for more community-based palliative care, if people become more aware of the services available to them."
Nursing Review spoke with Tracy about spirituality in palliative care and how community-based services can help share the workload of hospitals.
NR: What does in-home palliative care currently look like in Queensland, especially with Covid?
TP: An organisation like Karuna delivers home-based palliative care called community palliative care. So, that's a service model that runs outside hospital health services. A hospital will have a palliative care unit, and then Karuna will give patients end-of-life care for as long as possible. That means they can stay at home or wherever their place of choice is.
We support them with direct clinical care. We have a team of specialist and clinical nurses who attend to our patients on a 24-hour roster in their homes. So, we empower them to help as part of the care plan regarding symptom management. We also provide family support services, have social workers and counsellors and a volunteer programme coordinator, and it all works as a holistic model of palliative care.
Could you tell me what role spirituality plays in palliative care?
Spiritual care assists with the existential pain a patient might be experiencing. So, it's really about the care of the mind. It's also part of family support work, which includes spiritual care coordination to carers and loved ones. Our organisation was founded on Buddhist principles – we have a spiritual care coordinator who is a Buddhist nun. But spirituality can also be described as pastoral care.
These coordinators speak with the patient and help them to feel grounded. They might also have a conversation about the inevitable. And in a way, it's also helpful to their carers and families; to speak about what it all means, how they can calm their minds, and provide them with any questions they might have. And there's an interfaith aspect as well, where others such as catholic organisations might provide a support model similar to ours.
This spiritual model means they have someone available to go and visit in-home. People living with terminal illnesses also have a better experience of palliative care when that service is deeply personalised and profound. It enables people to live well where they are.
Is the underuse of in-home palliative care raising pressure on the healthcare sector?
We believe that palliative care in the community frees up hospital capacity. A lot of research says that people who have been in in-home care had fewer hospital patients and fewer visits to the emergency department.
Our average service period is 106 days, so if for much of that time we can help keep people out of the hospital, that makes a big difference to their life, the lives of their friends and family, and the hospital system.
A model like ours provides services 24 hours a day, seven days a week, with access to our team of specialists. So people can call and say, ’There's an issue. There's pain. What do we do?’ Then, we can either guide them through the situation over the phone or send out a nurse or social worker. That means there's less inclination to go directly into the emergency department.
What do you think is needed to improve community-based palliative care services?
Oh, that's a huge question. Obviously, funding is a big one, and we're supported by Queensland Health, which we appreciate. We also support ourselves through fundraising.
I think there's a lot of potential for more community-based palliative care to become available. An organisation with the skill set and expertise to see more people at home will take away referrals from the hospitals and the community. But funding would be the main thing we need, which would be used to promote growth and sustainability in the future.
Are there any barriers, aside from funding, to making in-home palliative care more accessible for people now?
I think it would go a long way if people knew what palliative care is. Unfortunately, many people don't know. So, having people understand that it's there for everybody, whether in a hospital or their own home, would lift one of the barriers we're experiencing.
The cost of palliative care in hospitals is expensive. In-home, holistic palliative care allows many people within the community to access those services. But, again, not everybody knows that these services exist.
What do you hope for the future of community-based palliative care?
I'd love to see more people working in palliative care. Not just in the community, but also among specialists and people who dedicate their lives to this particular vocation. It's such a rewarding job and quite inspiring. I've met some of the kindest, most compassionate people in my entire career working in this field.
Also, I'd love for the general public to know more about palliative care and that services exist. It can help them manage themselves, support carers, and understand palliative care.
Palliative care is not there to prolong or hasten life but to manage that period at the end of somebody's life with care, dignity, kindness and compassion.Do you have an idea for a story?
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