Julianne Whyte founded the Amaranth Foundation in 2009 in order to better meet the emotional needs of regional people living with a terminal illness or experiencing grief, loss and trauma.

What made you realise that emotional needs weren’t being met?

We have doctors, nurses and physios in my family, but when my father was diagnosed with a terminal illness, we found it hard to get him the care he needed. We are middle income, well-educated and health literate.

Dad was in his late 70s and still running a medium sized business, managing a foundation and serving as a director on several boards. He had responsibility for about 50 employees.

He had been diagnosed with three primary cancers over the past 10 years and was suffering terribly, but right until his last six months he worked a few hours every day.

Dad had palliative care through community services. He would get a phone call from the nurses each week to see if he was okay. Of course, he said he was – he told me they were lovely girls and he didn’t want them to think he couldn’t cope.

His cancer really annoyed him. He still had dreams and goals. He wanted to be seen as a person, not just a short, fat Italian guy with cancer, so at his medical appointments he would mention things, like his role in organising funding and helping to make the film Phar Lap, or meetings he was having with investors in Hong Kong.

As a result, he was referred to a psychologist who diagnosed him as being paranoid with grandiose delusions. He was prescribed an antidepressant and sleeping tablets. I had to step in and say – no, my father he actually has accomplished all of those things. He is not delusional. What’s worse is that even with that incorrect diagnosis, there wasn’t any follow-up counselling to support him, or my mother. The diagnosis was never questioned.

Before this all happened I’d worked as a discharge planner at Corowa Hospital, and I’d completed a project with general practitioners around care planning for rural families of patients with palliative needs. I realised we hadn’t considered the existential or counselling needs at all. Having spent 35 years in nursing, I then trained as a social worker, and then focussed on learning what therapeutic interventions would help at the end of life.

Dad’s experience really cemented for me that mental health care is really poor in palliative care. I thought, this is disgusting; I’ve got to do something about this. It’s wrong that you can’t get mental health support unless you’re in a hospice or really troubled.

So, with Dad’s help and advice, I set up the Amaranth Foundation in Corowa NSW, where I live, and it has extended into Wagga Wagga. I plan to expand what I see as a unique model of psychological support and therapy into Albury and hopefully across rural Australia.

What professional emotional support do you think should be a routine part of palliative care?

Good palliative care must embrace how terminal illness impacts on people’s lives. We need to develop an understanding of their personal narrative. It is important to acknowledge the psychological impact and existential issues, so people can make sense of this new time in their lives. Grief, loss and trauma need to be explored.

For many people, it is traumatic when their chronic illness – which they have lived with and managed well – has become unresponsive to further treatment. We have to offer a trauma focussed response that is person centred. Instead, we tend to focus our discussions on practical and clinical things, rather than what it is like for the person who is living with dying and their family.

I am trialling an approach which focuses on the psychological and existential needs of people who are dying. It is a mix of narrative therapy, dignity psychotherapy, cognitive grief therapy, mindfulness, and acceptance and commitment therapy.

It has a focus on what people contribute to the world in life, right up until their death, even in and out of an unconscious state. It looks at death in terms of the opportunity it provides to learn about yourself and others, and having conversations about that rather than allowing nothing to exist in that space.

We are running a national trial, with Charles Sturt University and integratedliving, looking at the difference that an effective evidence-based intervention and referral process can make for administrators, care givers and people with a terminal diagnosis.

You focus on people who are bereaved as well?

Yes. I see so much post-traumatic stress in people with who have witnessed horrible deaths, or what appears to be an expected death, but for the family it can still be traumatic. For many there are regrets, hurts, and unspoken things; things that people wished they had done more of, or said more often. And on a daily basis I hear very sad stories.

I had one guy in his 40s who came in crying because he felt he had let his wife down. She had cancer and was dying and he had sat with her for days. A nurse encouraged him to go home to have a shower, and she died while he was away. He and his kids stood at the end of her bed when they returned and didn’t know what to do. He said if someone had told him he could lay on the bed with her and give her a hug, he would have. He had wanted to have a lock of her hair. He wanted to be holding her hand when she died.

Staff told him his wife probably didn’t want him around when she died.

He needed someone to acknowledge that it was the hardest thing he’d ever had to do, and that if he felt he could have helped more maybe that was the case, and he needed help to learn to forgive himself.

There are new ways to sit with people and acknowledge and ‘hold’ their grief and sadness. It didn’t work for him at all for the staff to just announce she was dead, and then say that he had done a good job.

What is the Amaranth Foundation doing, in order to change that?

In addition to the trial I mentioned, I’ve also been working with Charles Sturt University and integratedliving on new palliative care courses which focus on building the skills and knowledge required to meet the mental health needs of people living with advanced chronic and terminal illness and their families. We are looking at the last 13 months of life, not just the last three months or so.

What drives you to make a difference in this area?

I see clinicians teaching outdated models of grief therapy and other therapy that really doesn’t help, and the reality is that you don’t get a second hit at this stuff. You have to get it right now. We need to examine what we’re doing, put a research hat on and make changes if we need to.

We don’t teach stages of grief anymore; that old concept of anger, denial, bargaining and then moving on. We look at coping and resilience; the meaning that people give their loss.

My Mum thinks I’ve got that wrong. Four years after Dad died, she is still angry. She spoke to a bereavement counsellor who told her that she was allowed to be angry with him because it’s an important stage of grieving. I have to laugh, but at the same time, it makes me sad. We need to understand the meaning behind her anger, not just tell her it’s okay and somehow normal. Four years later, it’s time to forgive him for dying.