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A call to prevent needless suffering: feedback from recent palliative care event

Claire Maskell of Palliative Care Australia recently wrote for Croakey about inequities in global access to palliative care and pain management.

The article was a preview to the recent screening in Canberra of the award-winning documentary LIFE before Death.  It drew an audience of 200 people including parliamentarians, health professionals, members of the public and also the filmmakers, Mike Hill and Sue Collins, and some stars of the documentary.

Thanks to Claire and her colleagues for providing this wrap of the film, including some responses from audience members.

***

“Everyone should see this film” 

Claire Maskell writes:

Professor David Hill

LIFE before Death takes us to 11 different countries to investigate what Professor David Hill, former President of the Union for International Cancer Control (UICC) and a subject in the documentary, describes as a ‘medical emergency on a huge global scale,’ the fact that 80% of people who died last year around the world died in needless pain.

The film follows health professionals working in palliative care and their patients to illustrate the profound effect untreated pain has on quality of life and how, with access to palliative care services and medicinal opioids, this quality of life can be immensely improved.

We learn quickly that the burden of untreated pain is not shared equally across the world and lies with low to middle income countries.

Gordon Gregory, Executive Director of the National Rural Health Alliance says, “I guess the most striking thing for me is the distribution. 15% of the world uses 94% of the medicinal opioids. I didn’t know that – that’s really striking – but it’s yet another tragedy on an international scale about distribution of resources, wealth and life options which has stunned me.”

Gordon Gregory

Perhaps the most difficult thing for the audience to comprehend was that the solution to ending this suffering is in essence quite simple.

We don’t need to spend money on investing in new drugs or technologies because we already have the solution – morphine. It is cheap to produce, easy to administer and highly effective in relieving pain.

Most of the audience simply weren’t aware that it wasn’t available, including Labor Senator Claire Moore, Chair of the Parliamentary Friends End of Life Care Group:

“We’ve been talking as a group of people who thought they knew about the issue, but the lack of available morphine was something we hadn’t looked at before. We were thinking it was more to do with the skilled management for pain and education. The fact that in all of those countries there was just not available morphine is criminal.”

Claire Moore

The film takes us through a number of examples why morphine isn’t readily available. In India, complicated regulatory and administrative processes prevent doctors from importing and distributing the drug to those who need it; in the USA, the War on Drugs campaign has created public misconception about the use of narcotics and there is stigma attached to their use; in Africa they suffer from the global shortage of morphine brought about because there is no profit to be made from its sale and therefore no incentive for pharmaceutical companies to produce it.

Joanne Grant from the Cancer Council ACT commented: “Until I saw the film, I had thought, after reading Elizabeth Kubler Ross’ books in the eighties, that morphine for pain relief for dying patients would be a given by now, and had no idea of the negative effects that the ‘Just Say No’ campaign had on the supply of opiates for medical use. The film was very confronting and certainly raised my awareness of the shortage of morphine for medicinal use for people dying in pain, especially in third world countries.”

Joanne Grant

Although the issues of untreated pain and inadequate access to palliative care services are more acute in the developing world, we are reminded that people still experience and die in pain in countries like Australia.

This was something that resonated with Nikki Johnston from the Capital Region Cancer Service. For her, a lot of the issues raised in the film really hit a chord with the work she does on a day to day basis and she believes it is about time that this is brought to public attention.

“I saw a patient yesterday who’s been in pain for 2 years from Ovarian Cancer. She’d had major surgery, radiotherapy and chemotherapy, and I was the first person in all of that time who had asked her about her pain. For 2 years she had suffered and all it took was 24 hours and now she is pain free.

“We need to get the message across that pain relief, within Australia at least, is available so let’s use it, let’s educate people, and let’s stop being frightened of giving enough pain relief to relieve suffering.”

Nikki Johnston

For a lot of the audience the film was a call to action that something needs to be done to prevent people suffering needlessly, including Dr John Rosenberg, Director of the Calvary Centre for Palliative Care Research.

“I thought that the film was confronting, but truthful, and presents really clearly what a single, solvable problem is. We need to participate in the activism that is building around this issue. The word ‘activism’ hasn’t been seen in palliative care for a long time, yet that is the sense of what is needed through what the film has exposed us to.

 

Dr John Rosenberg

“The film reminds us of the core purpose of palliative care and that is to allow people to have quality of life for the time they have left.”

As Megan Evans of Palliative Care ACT said: “I am reminded of a quote by Richard Lamberton who was a physician in the UK and said ‘if we can get a person’s pain under control and their body comfortable enough to live in, they can get on with dying’.

“I don’t think we can under emphasise the importance of pain control.”

Megan Evans

The LIFE before Death project comprises 50 short films themed around palliative care and pain management, as well as the movie. You can purchase the movie, view the short films and find out what you can do to help from the website.

We’ll leave you with this thought from Rachel Bilton-Simek who put it quite simply: “I think as a film it was a beautiful collection of the human condition.

“It was incredibly moving and well put together. I think everyone should be made to watch it!”

 

Rachel Bilton-Simek

 

 

 

 

 

 

 

• Photographs by idphoto.com.au

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#AHMRC16
#ANROWS2016
#ATSISPEP
#AusCanIndigenousWellness
#cphce2016
#CPHCEforum16
#CRANAplus2016
#IAMRA2016
#LowitjaConf2016
#PreventObesity16
#TowardsRecovery
#VMIAC16
#WearablesCEH
#WICC2016
2017 conferences
#17APCC
#ACEM17
#AIDAconf2017
#BTH20
#CATSINaM17
#ClimateHealthStrategy
#IAHAConf17
#IDS17
#LBQWHC17
#LivingOurWay
#OKtoAskAu
#OTCC2017
#ResearchTranslation17
#TheMHS2017
#VMIACConf17
#WCPH2017
Australian Palliative Care Conference
2018 conferences
#6rrhss
#ACEM18
#AHPA2018
#ATSISPC18
#CPHCE
#MHED18
#NDISMentalHealth
#Nurseforce
#OKToAsk2018
#RANZCOG18
#ResearchIntoPolicy
#VHAawards
#VMIACAwards18
#WISPC18
2019 Conferences
#ACEM19
#CPHCE19
#EquallyWellAust
#GiantSteps19
#HealthAdvocacyWIM