Back in the early 1980s, when stigma and fear clouded HIV and AIDS, Mike Kennedy volunteered to care for an infected man who wanted to die in his own home. Mr Kennedy didn’t realise it at the time, but he was participating in a land-mark community-based palliative care service. On the eve of International Volunteer Day, his experience offers valuable lessons still.

Did you have a health background that led you to volunteer?

No, not at all. I was working in the public sector at the time, and I heard about a man from our union who was diagnosed with HIV and AIDS. He had been hospitalised but he was desperate to die at home.

I volunteered, did a weekend of training, and the next Friday night at 10.30pm I was asking myself, ‘What are you doing here, with someone who is dying at home?’.

In those days a lot of people were diagnosed with HIV and AIDS at the same time. In many cases, they were estranged from their family, because they got dealt the triple whammy all at once: I’m gay, I have HIV and I’m terminal with AIDS.

Without family support, these people had no hope of being able to die at home.

I had contact with the AIDS Council and they said they couldn’t provide the required volunteers. But it said that if we could find 30 people who could make up a care team, it would partner with St Luke’s Nursing Service to train them. So, we hit the phones and got 30 people. St Luke’s had a community nursing service and they did a weekend of training for us.

That was the start of my volunteer palliative care work – not that it was called that back then. I ended up working in more than 50 care teams over time.

"It was often 3am when people wanted to have a chat with you about dying."

What did you and the other volunteers do?

We went in and did all the cleaning up, whether people had soiled themselves or vomited. I got very good at giving people a bed bath. I was pretty good at making a bed for someone who couldn’t get out of bed too.

When people did have friends and family around to support them, it meant that we could do all of those mundane but exhausting things, so loved ones could have quality time and offer emotional support.

When the dying person was alone, we provided some of that emotional support too. I was working full time, so I would mostly do the 10pm until 7am shift. It was often 3am when people wanted to have a chat with you about dying.

I reckon I was physically present for the deaths of more than 20 people.

Everyone did one shift a week, which meant we could provide care 24-hours a day, seven days a week.

How did a weekend of training equip you to cope with all of that?

The training probably wouldn’t pass muster by today’s standards, but it gave us the practical basics and it covered occupational health and safety issues in terms of infection control and physical care, which was important.

Aside from that, we were incredibly well supported. We would all meet once a fortnight, usually with the GP and nurses, to debrief and get updates. There was a very close relationship between the St Luke’s nurses and the volunteers.

We also had 24-hour phone support from St Luke’s, the GP and a social worker.

It might not have been set up the way we would do it now, but I ended up on the Board of the Australian Federation of AIDS Organisation for a number of years. I’m not aware of any formal complaints about the care that was delivered, or any legal action that arose in any of the State and Territory AIDS Councils that were using this model of volunteer care.

Who was volunteering to do this work at the time?

In terms of the man I was looking after, all of the volunteers had a connection with him through work.

More generally, there were a few gay men who volunteered, but there was still a lot of fear around the epidemic so it was mostly lesbians, and older women, some of whom had lost kids.

As the science around HIV got a bit clearer, the pool of volunteers got broader.

Very few of the volunteers had ever done any health care work and it wasn’t for everyone. Some people realised it wasn’t for them.

What long-term impact has it had on you?

My career has focussed on supporting people with HIV and AIDS. I did a lot of work as a senior manager in HIV-sector organisations, where volunteers were a key part of developing services.

I retired in 2011, but then I saw a job working for Palliative Care Victoria, working on a project for minority groups. I realised that I’d been working on trying to get end-of-life care for people from minority groups and their families since the 1980s and so I couldn’t resist. I applied and I’m pleased I got the job.

What impact has your experience had on your views about end-of-life care?

I don’t think you can just pick up that HIV model from the 1980s and 90s and apply it now. The world is a different place. But I am interested in what is happening in the US with community hospices, which take five or six people and allow them to be cared for in a house with a personalised team made up of families, palliative care nurses and volunteers. That idea seems worth exploring to me, because it has to be a whole lot less expensive than the other options and would give people a real choice about where they wanted to die.

I also think we need to have a discussion about whether we are being too risk averse and how risk can be managed, when it comes to training volunteers so they could fill gaps in a care team. It seems a bit strange to me that we could have an 86-year-old woman looking after her husband, feeding him, giving him his medication, getting him up to the toilet and all the things that might be required if he can’t get up to do that. Volunteers cannot help her with that personal care.

Personally, I think volunteers should be able to do that hands-on practical hard work. But as it is, volunteers can’t do anything that paid staff would do. Since personal care is now a certificate course and personal care workers get paid, in a lot of places volunteers can’t do work that a personal care attendant could do.

There are insurance issues too, but again, I think we need to be discussing that risk and how we could manage it.

If we don’t start having that discussion, then in 2020 and 2030 we will be totally overwhelmed by the number of people who want to want to die at home and who are not able to.