John Grayson has a deadly brain tumour. He knows he may only live for a few more years and has worked out his end of life wishes.
John Grayson has a deadly brain tumour. He knows he may only live for a few more years and has worked out his end of life wishes. Contributed

Why most Fraser Coast residents won't die a good death

AT 35 years old, the last thing John Grayson should be thinking about is death, yet it is rarely far from his thoughts.

"I want to go when living becomes more painful than dying," said the former physics student who was diagnosed with a rare brain tumour in November, 2014.

"I'd like the choice to have euthanasia, for my doctor to give me the medicine and for my family to be with me when I go."

Surgeons cannot remove all of the cancer from Mr Grayson's head and chemotherapy is out of the question because of medical allergies.

With almost half of the five years he was given to live already gone, it's only natural that Mr Grayson often considers the "end game".

"I know what the likely end game is for me - it's paralysis, cognitive impairment, severe pain and loss of mental capacity where I'll be in a dementia-like state," he said.

"When I get to the state where living becomes worse than dying and there's no medical option to improve my life, then that's when I will choose to die.

"I plan on having a wake but I don't want it to be jovial. 

"I want it to be a remembrance of me with lots of the things I enjoy.

"Death doesn't scare me at all - my non-existence post-death scares me no more than my pre-existence before birth."

While Mr Grayson is certain he will die a "good death", most of us will miss out on the opportunity to die on our own terms.

The Grattan Institute's Dying Well report shows 70% of Australians want to die at home but only a small number will actually get the chance.

In the Fraser Coast for example, there were 5632 deaths from 2010-2015, but the Dying Well report shows only 14% - or 788 - of those people would have died surrounded by their own four walls.

According to the Grattan research, 54% - or 3041 - of our region's residents probably died in hospitals and 32% - or 1802 - most likely died in the region's nursing and aged care facilities.

Deaths in the Fraser Coast are expected to double in the next 25 years as our population ages.

This is why medical experts would like to see more investment in at-home palliative care support that costs a fraction of residential care and hospital deaths.

Professor Hal Swerissen, who co-authored the Dying Well report, said the cost of care for the last year of life spent in nursing homes was $45,000; average cost of dying in hospital for those aged over 50 was $19,000; and the cost of community-based palliative care for the last three months of life is about $6000.

The Queensland Government's 2015-16 allocated $87m across the state's 16 hospital and health services, a further $1.88 million over three years went to the palliative care helpline Palassist; and $5.5m - over seven years - went to the state's pediatric hospice, Hummingbird House.

The Department of Health also contributes to Queensland's eight hospices.

Prof Swerissen said increasing in-home end-of-life support meant more people would have the death they wanted.

He said the formula for a good death was simple - dignity, choice, privacy and support.

"Good deaths are where people can have control over where they die, the care that they get and who they are supported by and that they get their symptoms well managed," he said.

"People also say that they would like to have the opportunity to say goodbye to people and to settle their relationships as well as put their affairs in order.

"People often will talk about having a friendly environment where they're comfortable and which is familiar to them."

Health Minister Cameron Dick said the state's regional hospital and health services were best placed to determine how their share of the palliative care funding was spent.

"It is important that decisions regarding models of care and distribution of funding are made by local clinicians - and administrators ensure services best address the needs of their community," Mr Dick said.

"Non-government organisations are also funded by either the Department of Communities, Child Safety and Disability Services or the Commonwealth Department of Health to deliver community-based services."  

 

PROFESSIONAL ASSESSMENT: Dr Shaun Rudd says   funding should be provided to help more Fraser Coast residents die at home.
PROFESSIONAL ASSESSMENT: Dr Shaun Rudd says funding should be provided to help more Fraser Coast residents die at home. Robyne Cuerel

Home is where the heart is

IN A perfect world, all of Dr Shaun Rudd's patients would have the choice of dying at home.

While Fraser Coast residents can access specialist inpatient and community palliative care services, Dr Rudd said the region needed more resources to help people die in a familiar setting.

"The main problem we have - and everybody has everywhere - is that there just isn't enough resources to support people staying at home for as long as they can," the Australian Medical Association Queensland president said.

"We know that the great majority of people want to die at home instead of going into hospital or a nursing home.

"Being at home is certainly a much better place to die - it's the place where they should be able to spend their last days or weeks.

"The only problem is that a lot of people do end up in hospital because of resourcing or the family finds they can't actually cope."

Dr Rudd said it was important for people to document their end-of-life choices and discuss them with relatives before they experienced medical complications that rendered them voiceless.

"This is a conversation that you should have long before you get to the point of dying," Dr Rudd said.

"We have advanced care directives and these allow the person, when they're well, to put down what they want.

"Most people have exactly the same wants and that is 'Just treat me and keep me comfortable'.

"They don't want lots of medical investigations and treatments; they just want to be kept comfortable.

"Letting your family know this is important because family members prefer not to have to make these decisions, they prefer for their loved ones to make the decisions themselves."

 

Palliative Care Australia researchers found 82% of us would like to talk about end of life choices, but only 28% actually do so.
Palliative Care Australia researchers found 82% of us would like to talk about end of life choices, but only 28% actually do so. Max Fleet BUN160215CEM1

Talking about death will not kill you

TALKING about dying won't kill you but it will make your death a lot less stressful for and your loved ones.

Palliative Care Australia CEO Liz Callaghan hopes local residents will take this message on board after the organisation's researchers found 82% of us would like to talk about end of life choices, but only 28% actually do so.

PCA's online "discussion starter", dyingtotalk.org.au, will help get the words flowing but there are a few more steps you need to take if you want all of your wishes met.

All adults, regardless of age, should complete an advanced care plan - or living will.

The advanced care plan lists the person you want to make decisions on your behalf and it will also guide doctors as to whether or not they should continue life-prolonging interventions or to allow you to die naturally.

You may also complete an enduring power of attorney that allows someone you trust to take care of financial and property matters when you cannot make those decisions.

Advanced care plan and enduring guardianship forms can be downloaded from www. advancecareplanning.org.au.

Once you've got your end- of-life decisions on paper, it's a good idea to start thinking about what happens after you die.

Of course you will need a will to ensure your decisions about care of children and/or property dispersal are taken care of.

You can ask a lawyer to complete your will or you can do it yourself.

Consumer group Choice has road-tested five cheap will kits and the reviews can be found at www.choice.com.au/ money/financial-planning- and-investing/financial- planning/articles/will-kit- reviews.

Funerals can cost $4000 to $15,000.

Your beneficiaries may use your superannuation payout to cover your funeral expenses, you can pay for your funeral in advance or you can invest in funeral bonds.

There is also the option of funeral insurance but the Australian Securities and Investment Commission warns premiums may become unaffordable as you age and there is a chance you will pay more in insurance than the actual funeral costs.

Details: Moneysmart.gov .au/life-events-and-you/ over-55s/paying-for-your- funeral.

Memorable ways to keep their memories alive

 

Montville glass artist Tina Cooper with one of her
Montville glass artist Tina Cooper with one of her "Forever Yours" Memorial Orbs. Photo: Darryn Smith / Sunshine Coast Daily Darryn Smith

MEMORIAL ORBS: Queensland artist Tina Cooper uses her glass-blowing skills to encapsulate human ashes into round or teardrop shaped distinctive orbs and urns with intricate and beautiful patterns.  For more information, visit www.tinacooper.com.

ASHKEEPERS: Ceramic sculptor Ashley Fiona creates works of art for your loved one's ashes. Working from her Port Stephens studio, Ashley describes her delicate spherical Ashkeepers as "vessels of purpose" that are designed to be "handled" rather than forgotten. "Once inverted, the lid creates a special candle holder for times of remembrance," she writes on www.ashleyfiona.com.

UPRIGHT BURIAL: Upright burials are considered to be better for the environment than normal burials. To be buried standing up, the body is frozen, placed into a biodegradable bag and then slipped into a vertical hole. The only upright burial cemetery is in south-west Victoria but the company behind the concept hopes the idea will catch on nation-wide. For more details visit  www.uprightburials.com.au.

 

TRU1711 page 48 Bios Urns
TRU1711 page 48 Bios Urns Bios Urns

ASHES TO TREES: A company called Urna Bios creates biodegradable urns that turns human ashes into trees. After you die, your ashes are placed in the cylindrical urn that contains a tree seed. The urn is buried and as it breaks down a new tree emerges. The company offers a range of tree varieties. For more details visit www.urnabios.com.

- ARM NEWSDESK


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