Waiting too long for palliative care causes needless pain for patients and families. For Jennifer Creal, timely pain management for her husband Christopher was lacking because of a two-week wait for specialist palliative care during a crucial time in his illness.
The Creals lived on a farm in regional NSW when Christopher’s active cancer treatment stopped and they were left waiting for a palliative care assessment and vital help from the palliative care team.
Christopher had cancer of the larynx that spread to his lungs and underwent surgery in Sydney, also travelling to a regional hospital for chemotherapy. Once the couple realised his health was ailing, they focused on maintaining his quality of life.
During two weeks of waiting for palliative care, Christopher’s health declined rapidly and he was taken to hospital by ambulance, in pain, in 2013.
Christopher’s oncologist had earlier referred him to a palliative care team. After a week at home without action, the team told Jennifer on the telephone that “yes, yes we are coming” but two weeks later, without an assessment or visit, his pain was out of control.
“They (the palliative care team) kept in touch and to be fair, Christopher’s cancer progressed very rapidly but at the end of two weeks I couldn’t control the pain and he was admitted to the Palliative Care unit at our local hospital,” Jennifer says.
Christopher died in hospital within three weeks of completing his chemotherapy and while specialist palliative care was helpful when he was able to access it, prompt attention would have benefited the Creals immensely.
“If we could have seen somebody in that first week and got him onto proper pain management – I am not saying it would have been the answer – but it would have been nice for me and the family because they were all visiting from Sydney,” Jennifer says.
People should have the sort of death that they want, says Jennifer, who believes that having family around when a loved one is dying is important. Pain doesn’t only impact the patient: “It is really about controlling the pain and that is what is worrying, if you cannot control the pain, it is really difficult to watch”.
The care was great when Christopher received it.
“The local palliative care unit is fantastic,” Jennifer says. “They have a unit which has a little annex where you can sleep, a fridge and a microwave – everything to make life comfortable and I did stay there a lot – I mostly stayed there actually and I am lucky to have a wonderful family. They were a great support.”
But timely palliative care at home would have been the right fit for Christopher, says Jennifer, whose brother died in palliative care at home.
“It would have been nice, and he would have liked it as well, if he had just been at home. I had a brother who died a few weeks after my husband (in another town) and he was nursed at home.”
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.