Of love and loss without palliative care

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Of love and loss without palliative care

When it became clear her son was going to die, Mary Brennan chose to bring him home.

When Mary Brennan’s young son died of bone cancer back in the early 1970s, palliative care was unheard of. More than 40 years later, she reflects on the experience, and her elder son’s decision to work in palliative care.

Mary Brennan, 84, apologises for the tears streaming down her cheeks. She’s been talking about her son Tom, who died when he was just 11 years old. That was 44 years ago, so she’s long-lived with the grief. But it has surprised her to find it lingering still, so very close to the surface.

She has been reliving the Monday morning Tom passed away. He was so weak he couldn’t walk; his father carried him from room to room. And he had a cough “you couldn’t believe was coming from a little child”, which rattled Mrs Brennan’s soul.

That morning he wanted to have breakfast with his family. He sat the Laminex kitchen table with his sister Mary, then six, and his brother Frank, 13. He then farewelled his siblings as they headed off to school, and his parents settled him in the family room for a sleep.

Soon afterwards there was an unexpected knock at the door. It was the family priest.

“I said, ‘Tom is dozing’. And Father came in and said ‘He is going’. I was amazed.”

Mrs Brennan and her husband Frank Brennan had accepted their son’s terminal diagnosis, but they had been told he would have up to 12 months to live. It came as a shock when he died within 13 weeks.

“When we all had breakfast around the table, we had no idea that would be the last time we would be together.”

“There was just Frank and I here, and Father Cosgriff. He took out his oils and anointed Tom.

“That Monday morning, it was just so beautiful. I said “It’s almost like God sent you, Father” and he said “Who do you think sent me?”

Mrs Brennan’s precious memories are from a time before palliative care had evolved. She doesn’t remember any services to support children who were dying at home, or their families.

Radiotherapy was not available in Canberra, so she and Tom travelled to Melbourne for treatment.

When Mrs Brennan learned that Tom’s bone cancer had spread to his lungs, and that any further treatment would be futile, her immediate instinct was to bring him home. She remains grateful to the orthopaedic surgeon who respected her decision, and for his advice that they should first complete the radiotherapy, to stop the tumour’s growth.

“He said, just as there is a way to live, there is a way to die. This will be better for you and for Tom.”

Back at home, the family was mid-way through renovating and the roof was off their house. Mrs Brennan had put her job on hold and Mr Brennan took leave from work. There were many sleepless nights, and they felt isolated, exhausted and alone.

“I wondered how much longer my husband could cope – he was so tired and distressed,” says Mrs Brennan.

“We were completely on our own with dealing with Tom.

“We never had a doctor in the house. He came only for the death certificate.”

“I had a friend who was a social worker who lived in the next street. After Tom’s death, we’d sit in my back garden and Barbara would let me cry. And she really kept me going. She was just marvellous. There were no social workers. No counsellors. No-one came near you. We were just ourselves.”

Mrs Brennan remembers Tom trying to make sense of what was going on. He couldn’t understand why he was still sick, even though his arm was better, and he was keen to get back to school.

“That was hard,” says Mrs Brennan.

“No one intimated to Tom that he was dying in those three months,” says Mrs Brennan.

“He worried that he would need to repeat his year at school. Father Anderson, his young teacher, visited him many times and reassured him that he would not need to do so.”

Mrs Brennan was concerned about the impact Tom’s death was having on his brother Frank, as the brothers were very close. Hearing that Tom was going to die was the first time Frank had faced mortality. It was also when he started to consider studying medicine. Now, more formally known as Dr Frank Brennan, he is a palliative care physician at Calvary Healthcare and St George Hospital, in Sydney.

“As a 13 year-old, I was deeply affected by Tom’s death and the grief my parents went through,” he says.

“That was a time when there wasn’t any formal bereavement counselling and there was an expectation that people would simply get back to work and get on with life.

“When I was at medical school there was no teaching in palliative care at all. It remained an area I didn’t know and wasn’t exposed to. But some decades later the idea of working in palliative care came to me, after palliative care had been maturing.”

He says today, children dying at home and their families would ideally receive support from a local palliative care service, with regular visits from a palliative care nurse, a doctor, and possibly a physiotherapist and occupational therapist.

“I remember sleepless nights and obviously it was very hard for both my parents, physically and emotionally.

“With a palliative care service coming in, there would have been close attention to the stress levels of carers and how they were coping and also the offer of respite. There might have been the option for Tom to come into hospital or a children’s hospice for a couple of days so my parents could rest.”

In the absence of palliative care professionals, Mr and Mrs Brennan also grappled with what they should tell Tom about his illness. They followed the advice of their parish priest, who told them not to tell Tom he had a serious illness, because he didn’t need to get his affairs in order.

“We didn’t know what his reaction would be; whether he would be absolutely distressed.”

However, Mr and Mrs Brennan did tell Frank.

“It was a time of great sadness, realising that Tom was going to die,” says Dr Brennan.

“I am glad my father told me, because that allowed me to prepare and to be very aware of what was happening around me.”

Dr Brennan says he admires his mother’s instinct, to bring Tom home. While parents may still hesitate, often out of wanting to protect siblings, “we were only too delighted when he came back to be together as a family.”

It’s an experience that though traumatic, enriches him still, providing genuine insight into what his patients and their families are experiencing.

“It may be that I don’t consciously think of that time when I’m with patients, but certainly, I am aware of the enormous impact on the patient and their family and sense of loss of a loved one.”