When her husband Gerard passed, Helen-Anne Manion (née Servetopoulos) and the whole family were by his side. Literally.

“My grandchildren, and four children they were all here, my son came from the US, we also had friends helping us in the tradition of dying at home, cooking meals for us, and so on.”

“We have a big king bed. Five adults on it, lying beside him and stroking him. In our arms he breathed his last breath. It was the most peaceful, beautiful death,” Dr Manion tells Neos Kosmos.

The family “just knew what to do”, because for the Manion couple applying the practice of ‘dying at home’ for themselves was “the epitome of our work together”.

Gerard and Helen-Anne are the founders of ‘Dying at Home’, a program providing caregivers and family members with practical support on how to care for a dying loved one in the place we all feel most comfortable. Both trained doctors, they have received awards for their work, including the Medal of the Order of Australia.

Established in 1980, the program’s offered at no cost to anyone who needs it.

Credit to the patient

Their idea for a program that taps into the wisdom of “caring for precious remaining life at home” was developed during a study and research stay in the USA in the ’70s.

“I was a palliative care physician and my husband Gerard was a cancer counsellor. One patient – let’s call him Bill – changed our way of thinking.”

Bill, Dr Manion explains, was one of the patients taking part in the Cancer Care program with his experience and testimony convincing the couple of the benefits in shifting the care of the dying person from an exclusively medical focus to encompass what enriches our life till the end; being around family and friends.

So what is this program about?

‘Dying at home’ is packaged as an 8-step process of resources available online in downloadable booklets with information and suggestions adjustable to one’s culture.

From guiding people through “managing difficult days” and preparing them ahead of “changes that happen”, to the value of “spending time together” and “caring for the carer” through to the “response in the final times”, the program constitutes a comprehensive guide that supports people caring for those approaching the end of life.

One of the downloadable booklets available on the program’s website is titled ‘Free medicines’.

It serves not as a substitute to medication but offers easy to follow tips and relaxations exercises to address issues such as sleeping problems, breathing difficulties, pain (physical or emotional), cough, nausea, as well as feelings of fear and anxiety.

“You know we’ve set up the program even in countries where there’s no palliative care,” Dr Manion says pointing to destinations that ‘Dying at Home’ resources have travelled to over the past 40 years, including Australia, South Africa, Myanmar, China, and East Timor.

“I’m absolutely dedicated to getting it out globally, which was Gerard’s vision.”

Since developed, the program has remained unchanged, Dr Manion says.

“Because engaging friends and neighbours and family together in a little community, is the way care was always done. But as a society we’ve forgotten how to do it.”

What makes a ‘good death’?

For Greeks and other communal cultures, the last goodbye is a family business.

Dr Manion knows this too well, being the daughter of a second generation Greek Australian migrant, one of the first Greek lawyers in Australia.

“His name was Constantine Servetopoulos but like many of the early Greeks facing such racism he changed his name to C. Don Service” she recalls.

With the program expanding, Gaza in Palestine and Greece are the two places where the ‘Dying at home’ team plans to deliver training next.

“I have a wonderful friend who is rolling it out in Greece,” Dr Manion says.

“We’ve developed a brochure in Greek and translated the eight steps program and the two main booklets she has chosen. Whatever she needs I’m just a Zoom away.”

Dr Manion is also contactable through the dyingathome.org website for questions by people who use the program.

“I don’t get that many requests,” she says, as all resources are online and free to download, “but whenever I do I’m dedicated to being supportive.”

Asked about how the program can fit within palliative care, Dr Manion explains:

“What we do is empowering, enabling and educating family caregivers. So that actually makes palliative care easier, because the remarkable thing is – and that’s well documented and it’s also been my own experience – that symptoms like pain actually decrease when you have people at home feeling comfortable. So these two things go well together as they don’t cross over. They just augment the whole home experience.”

Dr Manion believes “the dying person is a catalyst for bringing people together” when they say ‘I want to be able to die at home’.

Reflecting on this experience with her own husband she says:

“We were in a privileged position to be enacting what we have been doing for 42 years.

“And you know we have this saying that dying is not a medical illness. It’s a social event bringing families and friends together.”

Dying is an integral part of life after all. And it’s ok to talk about it. Where do you want to be when you are dying? If your answer is ‘at home surrounded by loved ones’ or you have someone close to you approaching the end of their life, you can find useful information on dyingathome.org