Just hours before my father died peacefully in a palliative care ward, surrounded by his family, he whispered that he “didn’t think it would be like this”. We hadn’t spoken about what his death might be like when we learned he had advanced cancer, but I still wonder whether the lead-up to his death matched up with what he’d actually wanted.
Conversations about dying are clearly confronting for patients and the people in their orbit but can be enormously helpful. I didn’t know if my father wanted to die in hospital or at home. I didn’t think to ask him because I didn’t want him to die and he was very focused on living.
It’s important to know, though, that if we would prefer to die at home rather than in hospital, we can explore options before the time comes and talk about what we want. Research suggests 80 per cent of people would choose home over hospital as a place to die, yet a mere 20 per cent of us achieve this.
“We need to be encouraging people to bring these conversations into everyday life, into everyday experiences and normalise these conversations in a much more powerful and meaningful way,” says researcher and clinical psychologist, Kerrie Noonan, who works in a palliative care ward.
“These conversations are not morbid, they are absolutely part of life and part of our wellbeing.”
As we aim for what we perceive to be a good death, help is at hand. Some of us think pain control in the end is what helps make a good death. For others, it’s essential to be surrounded by loved ones and have the opportunity to say goodbye. While none of us know exactly how it will happen, experts say it helps to start talking about our wishes before we get sick.
“A good death for people is such an individual thing,” says Kerrie Noonan.
“You can’t generalise what a good death is for people because everyone has a different version of what a good death is. It’s important we discuss what their version is and help them to achieve that as best as possible.”
A good death often means being surrounded by family and friends and it’s important they are involved in conversations about end-of-life options. Some carers may want to be closely involved in helping you at home but others may be worried about it and be fearful. Medical teams can engage with people in your close circle to help everyone decide on which type of care will likely work best.
For people who want to die at home, palliative care teams can support them and their families, with general practitioners (GPs), community nurses, physiotherapists, counsellors and other health workers on the front line to provide medical care and emotional support for all. While family and friends are not always able to help at home, hospices and hospitals can provide 24-hour care.
Regardless of where you choose to die, the emotional and physical toll of knowing you are nearing the end of life is something that can be eased by accessing care from a wide range of doctors, nurses, counsellors and volunteers who are trained to answer questions and assist you and your family and friends during this time.
For Carolyn Keast, having a palliative care team to support her during the final days of her husband Rick’s death at the age of 42 in 2009 was immeasurable and she still calls the community nurses her “angels”.
Rick spent the final 10 days of his life in his home in Wagga Wagga in New South Wales, being cared for by Carolyn, then aged 32 and 30 weeks’ pregnant with their son Jack. His medical team had told them clearly that he would not recover from the impact of an aggressive secondary brain tumour.
Carolyn says the couple had not discussed where Rick would prefer to die until shortly before he passed away, but urges other people not to shy away from having these conversations before illness takes over.
“I think if I hadn’t been so scared of the term palliative care, we probably would have had that conversation, but at the time, I thought palliative care was only for old people who were going to die,” says Carolyn.
“That’s how I viewed it. It was one of those things we were sort of frightened of.”
Barely able to talk, Rick clearly voiced the words “home” repeatedly when told he was near the end of his life while in hospital. Once home, Carolyn said she could see his relief and comfort in being surrounded by his family. The specialist palliative care team helped her care for him and supported her emotionally.
“For Rick, he perked right up as soon as he got home. If he had to go, that was definitely the way to do it,” says Carolyn.
When Rick made it clear he wanted to die at home, Carolyn says his oncologist made a valid point – that Rick hadn’t been able to make a lot of decisions about his illness because it had been aggressive but he was able to choose where to die and the palliative care team could help facilitate that.
“So it was his desire to go straight home and it happened,” says Carolyn.
At their home, the community nurses explained to Carolyn the physical signs that Rick was near the end of his life, practical advice she says was extremely helpful. At the same time, she was receiving emotional support as she talked to her husband and held him.
“They were just angels. I still see one of the nurses when we are out shopping… and I just feel like I have this really, really, close special bond with these two particular nurses,” says Carolyn.
“Having known them for 10 days and the impact they made on my life, I will never forget. It was natural and I felt very supported.”
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But that’s not always possible because of a shortage of specialist palliative care in NSW.
How you can help
So this April, we are asking cancer patients, carers and family who have experienced advanced or terminal cancer in the last five years, to call Cancer Council 13 11 20 Information and Support and share your experience.
You’ll help paint a picture of the difference that palliative care can make to people’s lives, as well as the impact of gaps in access to palliative care. Your stories will also help inform and strengthen the services Cancer Council provide to people with advanced or terminal cancer across NSW.
Call Cancer Council 13 11 20 Information and Support and share your experience.
9am-5pm Monday to Friday (excluding public holidays) during April
Or on Thursdays during the extended hours of 8am-6pm.
If you’re unable to call 13 11 20 you can also share your experience online.
Call Cancer Council 13 11 20 Information and Support to speak to a specialist cancer professional.