Have your say…for a few more weeks

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Leslie Williams

You’ve got a (small) opportunity to fill in a survey about palliative care in NSW, until December 15, this year (2017).

The NSW government has promised to spend an extra $100 million over the next four years for community-based palliative care services, on top of the money it already spends.

“We are listening carefully to the community’s views on where and how palliative care services can be improved so that we have a strong plan for the future,” said Port Macquarie MP and NSW Parliamentary Secretary for Regional and Rural Health, Leslie Williams.

Mrs Williams has promised answers from the survey and feedback from community consultation done earlier this year will inform a new palliative and end-of-life care policy in NSW.

“Getting the public’s feedback on palliative care priorities is vital if we are to produce better outcomes for everyone when the inevitable occurs. The survey will only take about 10 minutes so I strongly urge everyone to take this opportunity to have their say,” Mrs Williams said.

To add your two bob’s worth, go to www.health.nsw.gov.au/palliativecare

 

Too much or not enough pain relief?

 

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Heard the tail-end of a report on the radio today, which said access to morphine for end of life pain relief  is tightening world-wide. This, at a time when we also hear governments  are concerned access to addictive drugs such as morphine is too easy. We need to get the balance right.

A World Health Organisation report of August 2017 says:

  • Each year, an estimated 40 million people are in need of palliative care, 78% of them people live in low- and middle-income countries.
  • Worldwide, only about 14% of people who need palliative care currently receive it.
  • Overly restrictive regulations for morphine and other essential controlled palliative medicines deny access to adequate pain relief and palliative care.

Author Leah Kaminsky shares her insights

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Leah Kaminsky  (photo by Nicola Bernardi)

When I first started writing my book We’re All Going To Die there weren’t many public conversations on the subject of death, but since then it has really moved along. Sadly, however, it hasn’t moved fast enough. 

I’d like to see death education brought more widely into medical schools, for it to become part of every discussion, such as ethics, and how to communicate with patients, pretty much the same way sex education opened up and was being covered when I was a medical student.

This has happened rather effectively in other countries, such as the USA, with the introduction of ‘medical humanities’ subjects to students – but unfortunately, it hasn’t really taken off in Australia.

If this discussion around death was improved, I think it would really change things. There would be a really good platform for not just doctors but all health professionals, such as nurses or physiotherapists, who day in and day out support the dying.

Currently, there’s no formal debriefing mechanism for doctors and health care specialists. Of course we talk to each other and tell black jokes in the tearoom, but it’s not the same thing. Without more formal support, health professionals carry the impact of their interactions with death in a way that inevitably leads to ‘zooming out’ and a risk of burn-out or compassion fatigue.

Just this week I had to tell a patient, a young man with two small children who was doing well in his career, that he was completely riddled with an inoperable, terminal cancer, that the next thing he should do was go home and get his affairs in order. That’s a really difficult thing to have to tell someone but there is no formal, easily accessible debriefing mechanism for the doctors who must have those sorts of conversations, within our current medical facilities.

I hope this changes in the near future, because if it does, then we in the medical profession will be stronger and better equipped to give a much better quality of support to those experiencing the realities of mortality, either as someone dying, their carers or those who are grieving.

http://www.harpercollins.com.au/9781460749999/#sm.0000wmev8914pnecjwibvqqz696s7

Kaminsky book cover

Congratulations Noelene!

 

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Noelene graduates today at the Liverpool Hospital Palliative Care Volunteer training program. It’s a great program run by great people. She receives her certificate from Janeane Harlum, the area Palliative Care Manager and Alex Huntir, of Palliative Care NSW.

https://www.swslhd.health.nsw.gov.au/cancer/pallcareVolunteer.html

The deathbed vision

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Dr Michael Barbato, photo by Adam Knott, The Australian 

“With impending death, the circulation slows, the heartbeat weakens, and the breathing gets slower or more irregular, but just as the heart beat and breathing case, the brain seems to have a burst of activity.” – So says Dr Michael Barbato in a recent interview.

The interview can be found at Sydney’s Daily Telegraph. It reminds us that we know so little about the process of dying. It’s also a great introduction to Dr Barbato – who has so many insights into how to be at the deathbed of those we love.

http://www.dailytelegraph.com.au/news/nsw/dying-patients-study-reveals-brain-surge-in-final-moments-of-life/news-story/8a98ba1ee542f7fbe63aa90805cd8521

If this is difficult to find google:

Dying patients study reveals ‘brain surge’ in final moments of life by Jordan Baker.The Sunday Telegraph, June 4, 2017 12:00am.

(Thank you to Gary Pullar for suggesting this posting)

For more of Michael Barbato’s insights, go to:

http://theendoflifematters.com/experts/dr-michael-barbato-palliative-care

Some of Michael Barbato’s books are:

Reflections of a Setting Sun (2009)

Caring for the Living and the Dying (2010)

Midwifing Death (2014)

 

 

Why did this happen?

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I spoke to Suzan last week. Hers is a disturbing but common story. I’m going to talk to palliative carers about what went wrong and report back on how to avoid this happening to you.

When Suzan’s brother Frank was dying of a rare brain disease he was in an acute care hospital.

Although he arrived suffering from confusion, he was 61 and seemed fit and well. But he deteriorated very quickly and the staff at the neurology ward explained that he would never be able to go home, which was a big shock for his family.

“The staff suggested he would have to go to a nursing home. But we didn’t think that Frank would get the palliative care he needed in a nursing home. We just didn’t think that would be the right place for him at all,” said Suzan.

“The neurologists were fantastic, and said that a nursing home wasn’t appropriate, because they wouldn’t have the facilities to cope with him as he deteriorated, and he would just end up in hospital again. But we were told that he would only be transferred to a palliative care unit if they thought he only had two weeks or less to live. That was very hard,” Suzan said.

“Frank died seven weeks after he was admitted to hospital, and a palliative care bed was found just five days before he died. It was a much better atmosphere, and I’m glad he was finally transferred. But I don’t think someone should have to be on death’s door before we can find them a bed in palliative care,” she said.

 

$100m boost to palliative care in NSW

(This was first posted on June 12 at 8.33pm.)

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Therese Smeal – photo courtesy of The Liverpool Champion

Fantastic news – NSW is increasing funding for palliative care by $100 million.

“An extra $100 million will be pumped into palliative care over four years, including funding to employ new specialists and train 300 nurses and allied health staff.”

That’s how The Daily Telegraph announced new funds for palliative care today.

“The state will also invest in 300 scholarships to boost skills in the field of palliative care, as well as spending almost $7 million on services in Western Sydney that will include a 24-hour, even day a week on-call specialist palliative care service at home,” it said.

The package was praised by Palliative Care NSW president Therese Smeal, who said regional and remote parts of the state will be major beneficiaries.