For most of us, death is a great mystery – and not only in the spiritual sense.
It’s a mystery in terms of experience – what are the signs that someone is reaching the end of their life, and how do I look after them when they are? – and in terms of processes – who do I call when someone dies, and what arrangements do I have to make?
A feature of the modern Western world is that we have little to no exposure to the basic details of death, leaving us unprepared when it’s our turn to care for someone at the end of their life.
“A hundred years ago, you wouldn’t have needed me at the bedside guiding you in the dying process because you would have cared for many relatives and neighbours and friends,” said Rachael Zielinski, a Clinical Nurse Consultant in Specialist Community Palliative Care with HammondCare.
“Over that century we’ve medicalised dying, taken it into a hospital and put it in a side room, and made it something we shouldn’t talk about.”
This is why HammondCare, with the expert input of palliative care specialists such as Rachael, developed the Last Days program.
What is Last Days for?
Last Days and Last Days Dementia workshops help people know what to expect as someone dies, and encourage proactive decision-making to ultimately help those they care for achieve a good death.
“We want people to have those skills, to feel confident and able because at the end of the day, our care givers are so important – they’re vital!” said Rachael.
“They know their dying person way better than us. So it’s very much that we want to empower them, so we can work collaboratively with carers.”
Rachael points out that, like birth, death can advance in recognisable stages, and preparing carers ahead of time can make the process less frightening.
“There are phases to the dying process, and we want the community to recognise them, so they feel well supported and guided in how to care,” she said.
“If people have the knowledge, if they’re guided well, when those changes happen, they’re not distressed or concerned, not scared or worried, they’re prepared for it, less stressed and distressed because they understand what to expect.”
Last Days workshop participants leave with a handbook that is filled with vital information that people can take with them as a resource.
How does it help?
Rachael said that she has seen the program make a real difference for people caring for someone at the end of their life.
“We’ve had great feedback – we do ask people to complete a survey because this is really important and we’ve worked really hard on it, and we want it to be beneficial to people,” Rachael said.
“We know that 96% of people feel more equipped and competent to care for someone at home. They feel that they understand what dying is like now and would be able to recognise when the dying person is in last days of life. So, it’s been received very well from a majority of participants, which is wonderful.”
She added that some participants don’t have anyone dying in their life at the time – they just want to be prepared for the future.
“There was one man in his 20s who said, ‘I’m not in that place now, but I’m an only child and I will be in that place one day’,” said Rachael.
“The whole aim is to be prepared.”
How do I get involved?
Last Days is a program designed to equip people with practical knowledge and tools to navigate the last days of someone they care for. As well as the Last Days program, there are workshops specifically aimed at supporting someone with dementia through their last days.
Designed for families and carers supporting someone at the end of life, the program outlines what to expect when someone is dying and aims to help people have open and honest conversations about a person’s wishes and expectations in their last months, weeks or days.
Drawing on decades of research and experience in complex dementia and palliative care, the program is delivered by an experienced palliative care nurse in small group face-to-face or online workshops.
