We speak to Natalie who is living with terminal cancer about why palliative care at home is important so that she can die at home with dignity surrounded by her loved ones.
Natalie was meticulous about having regular mammograms every year on her birthday. Her results had always come back clear, and with no obvious changes to her breasts, she thought nothing unusual of the annual scan she had in 2013.
“I went and had my mammograme and this time I got called back” says Natalie. “They did an ultrasound and that’s when they told me I had breast cancer.”
Natalie was booked in immediately to see a surgeon to discuss a mastectomy, but a further scan revealed things were even worse than first expected.
“I went in for surgery to have a porta cath inserted into my chest to begin chemotherapy. I was still in my theatre gown and had just come back to the ward when the oncologist came to speak to me. He asked me how much I knew, and I said ‘not much’ and he said ‘I’m very sorry, but it’s terminal.’”
“I was really hoping against hope for a better outcome. I thought I was going to have to go with things, but I didn’t expect it to be a straight-out terminal. But it’s all through my bones. Not just a few spots. It’s riddled.”
Natalie was given 18 months to live, and two years on she is defying the odds, but staying alive does not come easily.
“I live with bone pain permanently which is not easy to live with,” she says. “My treatment will never stop. I’m not on chemo at the moment, and my cancer is holding.”
There is no real telling how long Natalie’s body can fight this cancer, but with no way of getting better it’s just a matter of time. Ensuring she is comfortable and has the best quality of life possible right now is all Natalie and her family can hope for.
Each year roughly 150,000 Australians die and research by the Graffton Institution suggests there is an unmet need for palliative care at home services – 70% of Australians would prefer dying with dignity at home. However, only 14% of people actually get to have this final wish.
In a significant step forward for the private sector, St Vincent’s Health Australia and Bupa have announced a two-year pilot programme to provide patients, like Natalie, with the choice to receive intensive, specialised palliative care at home.
“Many people don’t understand that palliative care is not a two-week thing. I still go up to the hospital once every eight weeks but the rest of the time people come to me.”
Natalie doesn’t just benefit from medical treatment in her home, the emotional and psychological help she receives is equally beneficial as she stares her diagnosis in the face.
“This is the revelation with palliative care. If I’d been just at home, and go to the hospital, come home and try to cope through the week… it’s all the little things you have diarrhea, and then constipation.
“You don’t sleep you take medication to sleep. You sit in the dark because light hurts, your head hurts, and you don’t know what to do. This is what they have given me, strategies. They have shown me how to cope,” says Natalie.
“I need these people. They come to visit me. They are a voice on the phone. I’m not alone.”
Palliative care is for people who have a life-limiting illness. Whether it’s an 86-year-old man with heart failure or a 16-year-old with leukemia, there is no telling how long the journey towards life’s end may take.
“The sooner people access our services, usually, the better their journey is because we’re not about trying to cure them. We’re actually about trying to make their journey as comfortable as possible,” says CEO of St Vincent’s Hospital in Brisbane, Cheryle Royal.
“We’re geared for palliative care. We have all of the support mechanisms around us whether it’s counselors, psychologists, occupational therapists, physiotherapists, palliative care specialists, the works,” she says.
Families of patients often also require preparation in not just caring for a loved one, but also in coping with and getting ready for bereavement when they are gone.
“We’re enabling the patient to have the best journey possible but also for us to be able to help the families through what is probably one of the most difficult times of anyone’s life, watching someone you love die,” tells Cheryle.
Although palliative care has long been offered publicly through various external and religious organisations, Cheryle recognised that this type of care was needed for private health patients. She approached Bupa’s Managing Director, Dwayne Crombie, at a social function to discuss the need she saw in the community.
“To his credit, he acknowledged this chat and he went back and organised for some of the Bupa team to come and work up a model for Bupa patients. I’m delighted to see Bupa lead the way for the private sector in an area that is important to us all,” she says.
Dr. Dwayne Crombie, Managing Director of Bupa Health Insurance, agreed that there needed to be a greater focus on end-of-life care and palliative care at home.
“With an ageing population it is becoming increasingly important that we explore models of care that provide people with dignity, respect and the choice to receive palliative care where they want,” Dr. Crombie said.
“We know that people who receive early and appropriate palliative care at home can have an improved quality of life with fewer symptoms and longer survival than those managed in an acute hospital setting.”
That model has now become something tangible as Bupa and St Vincent’s Hospital have partnered together to deliver a two-year pilot where Bupa members in Brisbane who have complex symptoms or are in the last few days of their life and want to receive palliative care at home now can.
“What generally happens is families connect with us, and we become more and more engaged as the patient's journey progresses. The bonus with this particular programme is that we will allow someone to stay with the family during the night time,” says Cheryle.
“Our role is really coordinating the most appropriate care, and that the appropriate drugs doses are being managed well, and making sure that the patient has the most pain-free and dignified death as possible.”
No one really wants to think about a prolonged or painful death, but if you had the choice, dying with dignity surrounded by loved ones would always be high on the list.