Doula offers support and comfort at life's end
WHEN you have been involved in nursing, particularly palliative care nursing, for almost 40 years, there are some patients who "just stay with you”.
For Toowoomba's Tracey Roberts, one of those patients, Bill, and his wife Robyn, would literally change her life, leading her to become an end of life doula and open her own business, The Last Leaf.
The name is inspired by an O. Henry short story based around the power of friendship, hope, sacrifice and care in the face of death, which Bill shared with Tracey before dying just over 12 months ago.
Tracey said there were too many gaps in the system at the moment for people facing a life-ending event, and too little knowledge about what to do, both emotionally and practically.
There was too much emphasis on the medical, and not enough on the personal, she said.
Having been a long-time nurse, Tracey has experienced first-hand how this can negatively affect people and working with Bill in particular led her to decide to help turn that around.
At The Last Leaf, she offers companionship and non-medical support to both the person dying and their family before and after the death.
It is completely up to the individual how much help they require, whether it's just coffee and a chat or ongoing support.
That can include helping them through discussions about end of life care choices, and if requested, being there for them at that time.
She said the best medical service in the world did not have the time to just sit and hold the patient's hand or stay with the family and talk.
"There is a huge need for someone to fill those gaps,” Tracey said, pointing particularly to people who may not have a support network to be there with them in the end.
"This isn't a 9-5 job - if someone needs me, at whatever time of the day or night, that's where I will be.”
Many people did not realise, she said, just how much was involved in wanting to die at home, the implications for the family and how much support was needed by both the dying person and their family.
She can also give practical advice on what legal documents are required, including advance care planning and directives, wills and power of attorney, as well as funeral planning.
"I'm not seeing them as a nurse, although my medical background can help families understand what the person is going through, for instance changes in their breathing and diet,” Tracey said.
"What I really do is help that person get ready, feel confident that everything is in place and empower them so they can really concentrate on living their life until they die,” she said.
Alleviating fear and uncertainty around end of life is a large part of her role.
"A lot of people - both the person dying and their family and friends - don't want to talk about death, how it will happen, what's involved ... or don't know how to,” Tracey said.
"They don't want to worry the other person or make them feel uncomfortable.”
But it's worse to ignore it.
Her suggestion is to admit you don't know what to say, and simply ask is there anything the other party would like to talk about.
That can mean reflecting on and sharing memories of their life - and having a laugh is healthy.
Tracey has also been running regular Death Cafes, where groups meet informally to discuss with her, a psychologist and social worker whatever they want to know about death and dying, thus overcoming the taboo which often surrounds the subject.
You can contact Tracey on 0414748036 or go to thelastleaf.com.au.