Why most Grafton 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 Clarence Valley for example, there were 3046 deaths from 2010-2015, but the Dying Well report shows only 14% - or 426 - of those people would have died surrounded by their own four walls.
According to the Grattan research, 54% - or 1644 - of our region's residents probably died in hospitals and 32% - or 974 - most likely died in the region's nursing and aged care facilities.
Deaths in the Clarence Valley 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 NSW Government gave the Northern NSW Local Health District about $1.8m for palliative care services in 2015-16.
Only $320,000 of this was allocated to the Clarence Valley.
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."
The NSW Government said it had made "significant funding enhancements" in community-based palliative care over the past four years.
"The NSW Government gives patients more choice in the care they receive at the end of their life and it is committed to growing the specialist palliative care workforce," a government spokesperson said.
"Local health districts are responsible for how palliative care services are configured and the model of care they provide, based on local service systems and community needs."
A guiding light at the end of days
IN THE shadow of death, Dr Kenneth Marr provides a guiding light.
Dr Marr's compassion and medical knowledge eases the process of dying for Clarence Valley residents in their last months.
Dr Marr said residents can access a range of services including specialist inpatient and community palliative care services.
This means professionals such as Dr Marr visit people in their own homes and in aged care facilities as well as support them in hospital.
As well as supporting patients, they help and guide carers to provide the ongoing medical help - such as medication administration - that their loved ones require.
"Even if the processes are not curative, there are things that can be done to make a person's journey more comfortable," the Northern NSW Local Health District palliative care senior staff specialist said.
"When people are terminally ill, it's about making sure they have enough nursing, medical and family support to die in the place that they wish to die in.
"When we're supporting chronically ill patients we need to make sure there is good symptom and pain and nausea control."
Dr Marr said without strong family support, people could not die at home.
"Family are very central to the end of life journey," he said.
"People want to have a home death where they are comfortable but it's impossible to have that unless you have the correct number of carers.
"The family has to be able to do that."
Dr Marr 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.
"Have a discussion with your family, a discussion with your GP, ensure you have an advanced care directive in place and let them know where you want to be when your time comes."
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.
Memorable ways to keep their memories alive
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.
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