Dying to Know Day sparks conversations about death

By Anna McGuinness

WE spend months planning for a birth, so why don’t we plan for a death?

Saturday, August 8, marked Dying to Know Day which aims to encourage conversations about the end of your life.

Echuca’s Brenda Milner lost her husband Terry 10 months ago to bladder and breast cancer.

Her family referred to the community palliative care nurses at ERH as “Terry’s Angels”.

After living in a bayside suburb in Melbourne, the couple brought their daughters Donna, Kelly and Brooke to Echuca in 1992, following their shared passion for horse racing.

In April 2017, they received Terry’s diagnosis and were referred to palliative care.

“We were a little bit dubious about it at first because you hear palliative care and immediately think `death’ and back off,” she said.

As Terry’s condition became progressively worse, Brenda said the nurses became more hands-on.

“He had kidney failure so he had a nephrostomy tube, they were always on top of that and just a very big help,” she said.

Brenda said she encouraged other families to take the advice from the palliative care team and have conversations, despite how difficult it might be.

“Terry wasn’t very good at talking about death, he wanted to tell me what he wanted but he didn’t want to discuss it with the family,” she said.

“But that leaves one person in an uncomfortable situation because you’ve got to tell the family — but it’s not coming from him.

“The team’s advice and help through that was great but he just didn’t want to open up a great deal.”

The last two weeks of Terry’s life were spent surrounded by family at a hospice in Bendigo.

“Our palliative girls had a lot to do with that, they organised everything and were on the phone all the time,” Brenda said.

“They’re gave a lot of good advice about how to deal with it and explain it to the family.

“Not just during but after that time, they were still on the phone and very caring, just amazing.”

Echuca Regional Health’s palliative care team works in and out of the hospital with patients and families to provide support through their final months, weeks and days.

Pam Teh has been a community palliative care nurse at ERH for eight years.

“We work with people who have a life-limiting illness which has no curative treatment,” she said.

“We help manage their day-to-day symptoms, so they can enjoy the best quality of life possible within the confines of their illness.”

A common misconception about palliative care is that it’s just for the last few weeks or days of someone’s life, however care can start from the diagnosis and continue after the patient has passed away.

“We find it’s good if we get involved earlier rather than later, because it gives us the opportunity to build up a rapport with families so they trust us,” Pam said.

“Part of my role is bereavement follow-up, so when someone passes away we don’t just leave people to their own devices.”

This involves a visit within the first few weeks, phone calls at three and six months, a card at 12 months, and an invitation to the annual memorial service at ERH.

This year the service was held without visitors, just one of many examples of how COVID-19 has affected how the nurses provide care.

“We’re a community-based service with visits primarily in people’s homes, so we’ve done a lot more screening over the phone and helping people as much as possible without physical contact,” Pam said.

“We’re also making sure there’s only one extra person in the home when we visit, which is hard because often at a time like this families gather together for support.”

Pam said conversations within families about end-of-life care were vital, but some people needed some time before they were ready to talk.

“It’s difficult because the vast majority of people don’t want to talk about death, it’s a taboo topic and I think there’s a fear out there that if I start talking about it, then it’s going to happen.

“It’s a process of gradually giving people the opportunity to get there at their own pace.”

At some point, an Advanced Care Directive may be introduced, which guides patients to think about what’s important, their wishes and values.

“Things like who they want around when they’re dying and little idiosyncrasies like they could want certain music playing or want to be dressed up in their footy colours,” Pam said.

“Sometimes there’s things that come out of those conversations and families are really surprised and grateful they’ve had the opportunity to find out.

“We often find there’s a lot more anxiety and tension when those conversations haven’t happened and there’s not the cohesion you can sometimes achieve.

“It sounds crazy to say, but there have been many times when we’ve all said ‘that was such a beautiful death’, because the family were all on the one page, they were united, they knew what their loved one wanted, you can certainly sense that.

“It’s a little bit unpredictable sometimes how things play out, we do our best to ensure people are comfortable and peaceful, but unfortunately there are times when even with the best of efforts you can't always ensure that.”

Brenda said her relationship with the community palliative care team was huge.

“The bond and the trust was huge, which is why they were nicknamed Terry’s Angels,” she said.

“I’m indebted to them, because as a couple going through that, they helped us a lot.”

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