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Let’s talk about death

Access issue: “A lot of people just don’t have access to palliative care even in Queensland.”

DYING is one of the most widely misunderstood natural processes. 

Like a pregnant mother heading towards labour, it was often when people learned more about what they would go through that the fear of it abated, palliative medicine specialist Dr Judith McEniery said.

“It’s the same thing with dying, if people knew about the ‘normal’, they would be less afraid,” she said.

“We’re all in the same boat, we’re all going to face death at some stage, the more we know about it, the less scary unknowns they’re going to have.”

Palliative care was not one-size-fits-all, and like other medical specialties, was about treating the patient.

Death did not need to be imminent for palliative care to be available; palliative care was often undertaken with death still years away, especially with the amount of active treatments patients could seek these days.

But fear still shrouded the topic.

Dr McEniery said she wanted to emphasise that during the first visit to a patient, the number of times a patient or family member has said, “I thought this would be really scary, but this is wonderful, thank you so much”.

“It is a very detailed assessment and approach to helping someone,” she said.

“We look not just at the physical, (but) at the family implications, what’s going on emotionally, we might touch on financial troubles, spiritual and psychological issues…

“Finding out about family members who are no longer in contact or something that’s happened in the past, a person’s never really come to accept, or just a whole lot of things that might not be related to the illness they’re currently experiencing but that we might be able to help with.

“People are so grateful for that sort of overall assessment that palliative care can offer.”

It was also important to recognise that a patient who sought palliative care often had many conditions piling on top of one another, which required management.

The patient might have a cancer, an organ failure, a chronic illness and dementia simultaneously and they would find specialists to help with those conditions like oncologists and surgeons. 

Among those specialists, the patient might also see a palliative care team.

This team could manage the symptoms and concerns of those many conditions the patient faced.

“That’s when palliative care really can help to sort out what’s actually the concern for people, what’s actually compromising their quality of life, and help them anyway they can,” Dr McEniery said.

People often did not realise that dying people were dying, too.

“Particularly when they’re so sick, they’re coming to the end of their life anyway, they need to be reassured that’s okay,” Dr McEniery said.

“… People say things like, ‘I wouldn’t let a dog suffer like this.’

“You can say, ‘Well, in what way do you think your loved one is suffering?’

“And you can address whatever that is, and they say, ‘We would kill someone in this situation’”.

“What I’ve found over the years (was) we don’t need to cause this person’s death, they are already dying. ‘Do you realise that?’

“Oftentimes people have not realised that, it’s actually news to them at this time.

“… It’s happening anyway, we’re not going to cause it to happen, but we can look after you and make you comfortable and … most times it’s a very simple combination of medications that we can prescribe to that (patient).”

Dr McEniery said palliative care could always assist in some way.

“We can often manage to control symptoms with fairly straight-forward, readily available medication,” she said.

“The problem is of course that there aren’t many palliative care services, or palliative care workers, compared to the need.

“A lot of people just don’t have access to palliative care even in Queensland.”

Dr McEniery said she hoped out of the current public debates to see more investment in palliative care.

She said it was important to ensure palliative care was available directly or through other means like telehelp, which was utilising technology so doctors and nurses could see patients at a distance.

“Palliative care needs huge investment of funding to make it more evenly available, more fair,” she said.

“In Brisbane and Ipswich and a lot of Sunshine Coast, there are excellent services. 

“If you’re in Barcaldine, it’s really tough, you may have a good (general practitioner), or you may have virtually no resources whatsoever.”

Where it was available, it was often a shock to people.

In a previous piece for The Catholic Leader on May 19, palliative medicine specialist Dr Phillip Good wrote the first thing that strikes most patients and carers when they arrived in his ward was the peace, space and quietness of it.

“It is bright, and airy and has this amazing art collection hanging on the walls,” he wrote.

Dr McEneiery said a palliative care unit usually within a hospital was a designated area that was different in its approach.

She said palliative care recognised the person as an individual who came with a family or with a background that needed to be recognised, addressed and personalised.

“It is a fantastic environment sometimes,” Dr McEniery said.

“People often said to us, I thought this would be a gloomy place. 

“Whereas it’s actually quite an open, welcoming, cheerful place some of the time because people are making the most of the time that they have. 

“I really suggest, if you haven’t already, that you get to visit a unit at some stage. 

“It really does open people’s eyes as to what palliative care is about.”

Having spent a life in the medical profession and many years as a palliative care specialist, Dr McEniery said what has impressed her the most was how resilient and courageous people were.

“I guess … when palliative care (workers) say they learn from their patients, I think that’s what they say they’re learning – they’re learning how wonderful people can be.”

She said it had been a privileged career getting to know those patients, families and carers.

“Also you get to work with fantastic people like the nurses and allied health professionals who are drawn to palliative care, (who) tend to be very special people,” she said.

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