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Hi it’s Patrik Hutzel from www.intensivecareathome.com.au where we provide tailor made solutions for long-term ventilated Adults& Children with Tracheostomy by improving their Quality of life and where we also provide tailor made solutions to hospitals and Intensive Care Units to save money and resources, whilst providing Quality Care!
In last week’s BLOG I talked about
“CAN YOU LEARN TO LOOK AFTER SOMEONE AT HOME WITH A TRACHEOSTOMY AND VENTILATOR?”
You can check out last week’s blog here.
In this week’s blog I want to share an article from the ABC that once again highlights the dilemma that many Patients and their Families face when approaching their end of life in Australia.
The title of the article is
The article highlights that
The number of people wanting to die at home- if given the choice- is greater than 70% and yet less than 15% actually do die at home!
It’s very sad to find that health services are still not stepping up to the plate and outside of their comfort zone and deliver to Patients and their Families what they actually want and need.
In essence, many Departments of health and Hospitals including Intensive Care Units operate in a vacuum when it comes to end of life situations, ignoring the fact that people want to die at home.
It also shows once again that Hospital in the Home, Community and Palliative Care services in Australia are at least 30 years behind other first world countries when it comes to palliative care in the community.
This includes specialised areas like Intensive Care, where some end of life situations can be managed at home and give people what they want.
The ”Australian and New Zealand Intensive Care Society” (Anzics) has published in their latest statement from their 2014 edition about
ANZICS Statement on Care and Decision Making at the End-of-Life
That Patients, Families, as well as health professionals in Intensive Care should
ANZICS Statement on Care and Decision Making at the End-of-Life
And yet, in reality this is hardly more than a lip service, as very few Intensive Care Units and very few Intensive Care health professionals are prepared to step up to the plate and outside of their comfort zone!
I urge Hospitals, Intensive Care Units as well as Departments of health to finally step up to the plate and engage services that actually give people what they want in end of life situations!
Other first world countries have shown that win-win situations can be achieved in end of life situations by giving Patients and Families what they want, by freeing up expensive and in-demand hospital and Intensive Care beds and therefore saving money!
Here is the article from the ABC
By Clare Rawlinson
Pat senses the slow onset of motor neurone disease as she sits in her armchair, a knitted blanket permanently draped over her legs.
Four years after diagnosis, she no longer has proper control of her arms and struggles to use her hands. Food has to be delivered in a mushy form.
But for the few hours each week she shares with a palliative care volunteer, Claudia, these challenges fade away.
“We chat about everything, happy things — there’s no doom and gloom,” Pat said.
Claudia’s visits are part of the reason Pat has been able to avoid a dreaded transition to a nursing home.
She also has daily visits from palliative care nurses who help her out of bed, shower her and help with her evening routines three nights a week.
The rest of the work is done by her husband, Kevin.
As a former nurse herself, Pat has struggled to adjust to the role reversal and full-time caring has put pressure on Kevin.
“He’s never worked at home in his life and now he does everything,” Pat said.
Pat is one of more than 15,000 Victorians who receive palliative care in their own homes, which is subsidised according to their needs and the funding restraints of service providers.
A majority of palliative care funding is spent at hospital — approximately 70 per cent.
They’ve got all their home surroundings, they can have a hospital bed in the lounge room and their dog on the bed.
Claudia, volunteer palliative carer
Palliative Care Victoria estimates the cost of caring for a chronically or terminally ill person in hospital is between 40 and 300 per cent higher for the taxpayer.
Chief executive of Palliative Care Victoria, Odette Waanders, says there is an urgent need for investment in community-based palliative care as a viable alternative to hospital care.
Aside from it being substantially more expensive for the Government to house chronically ill people in hospitals and nursing homes, it is also against the desires of most Victorians.
A recent auditor-general report into palliative care found 70 per cent of terminally ill Victorians wish to die at home, yet only 14 per cent do. More than 50 per cent are dying in hospitals.
“It’s also adding to the hurt and sense of loss for [family] carers, who feel they’ve let down their loved one right at the end,” Ms Waanders said.
“When it all gets too much for them and [community-based palliative care] can’t help enough … it can lead to complex bereavement.”
Family, volunteers keep home-based palliative care alive
While Pat is happy to die in a hospital or nursing home, remaining at home as long as possible is essential to her quality of life.
“It’s very important — it’s much more fun being at home than being in a nursing home,” Pat said.
It is a story Claudia has seen many times in her role as a volunteer palliative carer.
The way we support people to live and die well needs much better investment — and first and foremost that’s helping them to receive care, and die, in their place of choice
Odette Waanders, Palliative Care Victoria chief executive
“They can have their family around them, they’ve got all their home surroundings, they can have a hospital bed in the lounge room and their dog on the bed,” she said.
“And they don’t have a different nurse walk in from shift to shift.”
But without the fundamental role of unpaid and family carers, community-based palliative care would be limited to the minority of terminally ill Victorians.
“Most carers are unpaid so it’s very much the informal system that supports people through this process. The role of palliative care is to support them as partners in that care,” Ms Waanders said.
“It really means we need to step up as a community in supporting families and volunteer programs. Unless we support those programs we are going to rely much more on paid work.”
The sense of urgency is keenly felt in the context of Victoria’s ageing population, with more than 150,000 Victorians expected to die in next four years.
As long as hospitals are the primary place for palliative care to be delivered, they will bear the brunt of the increased demands.
“The way we support people to live and die well needs much better investment — and first and foremost that’s helping them to receive care, and die, in their place of choice,” Ms Waanders said.
“For 70 per cent of people that is at home.”
For Pat, her home is where she wishes to receive care, up to the point it becomes too great a burden on her family.
The combination of professional palliative care and unpaid care from her husband and Claudia is integral to making this a reality for her — and the quality of life is something she can’t put a number on.
What are your thoughts? Where would you want to die or would you want your family members to die if given the choice?
Leave your comments on the blog!
Please also note that INTENSIVE CARE AT HOME has been selected as a preferred provider for Queensland Health Services as part of the recent “Hospital in the Home” tender.
We are also currently hiring enthusiastic and experienced Intensive Care nurses with Critical Care certificate for a ventilated Melbourne Client, close to the CBD. We also require Critical Care Registered Nurses for Home visits for (non-ventilator dependent) Tracheostomy Clients.
For more information check out our Career section here www.intensivecareathome.com.au/careers or contact Patrik on 041 094 2230
You can also contact me on 041 094 2230 if you want to know more about how we can help you, your Intensive Care Unit and your Patients and Families.
Thank you for tuning into this week’s blog.
This is Patrik Hutzel from www.intensivecareathome.com.au and I’ll see you again in another update next week.
RELATED LINKS:
What an extension of Intensive Care looks like in the real world
Family meetings in Intensive Care or the elephant in the room
How you can focus on making health dollars go further and really make a difference
3 reasons why long term mechanically ventilated Customers, their families and Intensive Care Units need specialised Intensive Home Care Nursing services in the community
5 steps to become a better negotiator if your loved one is critically ill in Intensive Care
