Every death is different but when specialist palliative carers are on the frontline, a distressing death can be made easier. For Nicole, of Sydney, hospital palliative carers were on hand when her husband Blake died in a physically confronting way, by bleeding out.
Despite the horrific circumstance Nicole faced as she stood alongside her husband as he died in this way, she says she felt supported by specialist palliative care staff who were there to help him and to help her.
This was not the case with the death of Nicole’s mother, who died under the care of a geriatrician in a hospital ward following a stroke, with doctors providing “their version of palliative care remotely” with no explanation of what was happening to her. The family had been advised she could not access a specialist palliative care facility, Nicole says.
“Blake (Nicole’s husband) was four days in a standalone palliative care ward with 24-hour access, specialised staff,” says Nicole.
“We had the chaplain pretty well on our case, on call, we had (the doctor) on the case, on call the whole time. We had staff who did this, day in and day out. They knew what they were doing. They knew to tell me ahead of time (what to expect).”
Blake’s death was harrowing for Nicole as she was with him while staff helped him. The death of Nicole’s mother, while more peaceful, was not as well supported, she says.
“I felt more supported in his passing than I did in hers.
I had to run out at one point and say ‘I need someone from palliative care’ and they said ‘they don’t start until nine’ and this was about a quarter past seven in the morning.
I believe there is a huge difference.”
Nicole says that while it’s recognised that “it takes a village to raise a child”, we forget that “it actually takes a village to support someone when they pass as well”.
“Someone passing away in a hospital shouldn’t be a statistic. It shouldn’t come down to a statistic. I understand that palliative care is a very new realm of medicine … it’s still not given the respect it deserves,” says Nicole.
Nicole says palliative care can provide very good support for family and community around the person who is passing.
“I think the flow on effect of that is a greater acceptance of that person’s passing,” she says.
“The support for their family and friends and community and co-workers and from that, I think we end up with greater social awareness. You end up with people managing the process of grief better. For me, I don’t think palliative care is wholly and solely around symptom management and pain control – I think it has many layers and they all have value.”
Nicole says her experience of palliative care shows her that good specialist care enables comfort for the patient and loved ones.
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.