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 Sunshine 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.

Across the Sunshine Coast and Noosa for example, there were 14, 312 deaths from 2010-2015, but the Dying Well report shows only 14% - or 2003 - of those people would have died surrounded by their own four walls.

According to the Grattan research, 54% - or 7728 - of our region's residents probably died in hospitals and 32% - or 4579 - most likely died in the region's nursing and aged care facilities.

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

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; the average cost of dying in hospital was $19,000; and three months of community-based palliative care was about $6000.

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

The Health Department also contributes to the state's eight hospices.

Prof Swerissen said the formula for a good death was "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 each hospital and health service was 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."

 

Dr Louise Welch.
Dr Louise Welch. Greg Miller

A guiding light at the end of days

IN THE shadow of death, Dr Louise Welch provides a guiding light.

The Sunshine Coast Hospital and Health Service palliative care specialist's compassion and medical knowledge eases the process of dying for people in the last months, weeks and days of their lives.

Sunshine Coast residents can access specialist inpatient and community palliative care services.

This means professionals can visit people in their own homes, in aged care facilities and can provide support via video conferencing as well as support them in hospital.

As well as supporting patients, medical experts such as Dr Welch guide carers to provide the ongoing medical help - such as giving medications - that their loved ones require.

"Support for the carer and the patient is probably one of the biggest issues," Dr Welch said.

"If someone has a terminal illness, they cannot stay at home if their carer is not supported."

"Our role is to support the GP and the nurses in the community to keep the patients at home for as long as possible.

"We also support aged care providers to keep the elderly patients at home."

Dr Welch said the longer a patient could stay in their own home, the better it was for their physical and emotional health.

"Being at home is hugely important," Dr Welch said.

"If we can get patients into their own environment, even if they have confusion or delirium from their illness, it can make a huge improvement for them.

"If you're in a hospital bed everything is completely out of your control."

"You can't do anything that you would normally.

"You get the medications when the nurses give it, not when you would be conveniently getting it."

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

"In our service we try to start the advanced care planning as soon as we meet our patients and their families," Dr Welch said.

"People are becoming aware that it's appropriate and sensible to prepare for the end of their life and to make decisions when they're able to instead of when they are going through a crisis.

"Doing this takes the burden off their families."

 

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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