The "right" care starts with you | Chris O'Brien Lifehouse
 In Inspiring Stories, Lifehouse News, Patient Stories

Denise describes her father as “fastidious” and “not a man easily pleased”.

He was treated for inoperable metastatic oral cancer, with a combination of radiation therapy and an immunotherapy medication.

After five treatments, tests showed it was having minimal to no effect on the cancer but was affecting his liver function.

Denise’s father decided he did not want to continue treatment, nor return to hospital.

“Dad had his own ideas,” she said. “He would make up his own mind.”

“Professor Boyer was great in the sense that he said ‘it’s your dad’s choice. It’s his call. He can decide what he wants to do.’

“He spoke on the phone to Dad and explained what would happen if Dad did come back and what would happen if he didn’t. Dad listened. And said ‘OK, I don’t want to come back.’”

“He was in a lot of pain and was seeing a pain management specialist. But he was never able to get the pain under control. He said, ‘I’ve got no quality of life.’”

Over the next three or four weeks, Denise’s father became sleepier, and more confused.

He wanted to die at home.

“On the day he died, he collapsed, and my daughter found him at home,” she said. “He was lying on the floor. We called the ambulance and brought him upstairs.

“He mustered every little ounce of strength to say, ‘no more’.

“I said, ‘Dad, you understand it’s not too late to go to hospital and get this addressed?”

“He said, ‘Let’s not go over it.’”

He died July 28, 2019, at 87 years old.

“In the end, it was a really good passing. He was in his room. His family was around. It was on his terms. He didn’t seem to be in pain. It was a peaceful, good way to go.

“That was pleasing for me. I knew that’s what he wanted.”

“We were prepared. We had a direction for the paramedics to say he didn’t want to be taken to hospital. We’d had these conversations in advance. So, we knew what Dad wanted.”

“Professor Boyer filled in many gaps, just off-the-cuff. He was always contactable to give advice.”

After this experience, Denise’s daughter, a medical student, said she wanted to specialise in oncology. “They’re just special people, Mum,” she said.

A/Prof Chris Milross, who managed the radiation treatment, said, “he had wonderful kids in the sense of being supportive of him and respectful of his decision-making.

“They understood him. And they strongly protected his right to self-determination.”

“In all the discussions, we gave him all the options. And he chose what he chose.”

*Name not printed to protect patient privacy

‘The story of Denise’s father* shows that patient-centred care means genuine listening and responsiveness to an individual’s needs. Sometimes, this looks different from what we might expect.’

 

“lt’s an example of how the right care is that care which the informed patient will accept. And we have to accept that.”
— A/Prof Chris Milross

To read more stories like this, please visit our 2018-19 annual review.

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