This article currently appears in the September-October 2013 edition of Australian Ageing Agenda.
“We have to get people clearly understanding that they need to appoint an enduring guardian and they need to make that person’s job easier by writing an advance directive.”
Sally Loder, 79, is a strong advocate of advance care planning because she wants to ensure her wishes are carried out, even if she is not able to express them herself. “I don’t want my kids to have the responsibility,” she says. Nor does she want them to fight over what medical care she does or doesn’t receive.
While in hospital last year, Mrs Loder witnessed two sisters fighting over whether or not medical treatment should continue for their mother. “What one daughter was putting that mother through was hell on earth. That made me think I have to make my wishes known legally,” she says.
Soon after Mrs Loder left hospital, she went to see a solicitor to create a formal advance care directive (ACD). The couple of hundreds dollars in fees is worth the piece of mind, she says. “You just never know how your kids will react when you’re dying.”
Mrs Loder reviews her ACD regularly to suit her changing views and health status but it hasn’t been invoked yet. Her local hospital in western Sydney has it on file, she says. “I also have a copy sitting here at home so when the police or the ambulance comes they can see it. My doctor knows about it. I also take a copy with me in my bag when I go anywhere just in case.”
To cover herself in case she becomes unable to advocate for herself, Mrs Loder has nominated one of her four children, daughter Wendy, to be her enduring guardian. “Wendy knows she has to consult with her brothers and sister,” says Mrs Loder. “But actually, there’s nothing to consult about because I have done it all.
This ticks all the boxes for advance care planning best practice, according to Professor Colleen Cartwright from Southern Cross University. Cartwright, who is the director of the ASLaRC Aged Services Unit at SCU, has been working in the field of advance care planning since 1990.
While the different legislation, documentation, terminology and rules that apply within the states and territories can be quite confusing for the community and health professionals, she says, in Australia, the umbrella term advance care planning covers two aspects.
One is appointing a substitute decision-maker, commonly known as an enduring guardian or a medical agent, and the other involves writing your wishes in an advance directive, often referred to as an advance care directive, or ACD.
“We have to get people clearly understanding that firstly, they need to appoint someone and secondly, they need to make that person’s job easier by writing an advance directive,” Cartwright says.
And the two parts are equally important, she says, and when done together act as an insurance policy.
“You could just write your advance directive but sometimes for the situation facing health professionals or the family, you might not have covered that scenario.
“That is why you also need to appoint someone to make either the decision you haven’t covered and/or be your advocate so the decisions you have made are respected,” Professor Cartwright advises.
The ‘no plan’ dilemma
If neither is done, Cartwright says most people incorrectly assume their next of kin can make a decision. But that isn’t the law, she adds.
“The law is designed as much as possible to support patient autonomy. It starts with the advance directive, the patient’s own words. If there isn’t one, or it doesn’t meet the situation, it moves to the person the patient has appointed. If there isn’t one it then asks who next is most likely to know what this person would want.”
In NSW and Queensland for example, Cartwright says it would next go to the spouse, married or defacto, followed by the non-professional carer, who is often a daughter or daughter-in-law but perhaps even a neighbour.
“If you really want to be certain about who is going to make your decisions, discuss it with your family members and appoint them,” she says.
Writing it down
Preferably your ACD is written in consultation with a treating medical practitioner, ideally a GP, but not in a time of crisis, Cartwright says. “Asking someone when they are critically ill, is absolutely not the right time to do it.”
What you write it on is not as important as where it is kept. In a common law case in NSW in 2009, the judge set out all the ways a competent person can make their wishes known if and when they lose capacity, Cartwright explains.
“It virtually boiled down to you can write it on the back of an envelope. And if there’s evidence that you have written it and no evidence you have changed your mind, it holds.”
However, having the document available when it is needed is a big issue, she says. “I say to people, get yourself a little card the size of a business card and write on it ‘this is where you can find a copy of my ACD’. On the flip side write ‘I have appointed a substitute decision-maker, here is their phone number’.”
In addition to keeping a copy of those documents at home, your GP and the person you have appointed as substitute decision-maker should also have a copy, she says. “If your family doesn’t live close by, give your neighbours a copy so if the ambulance arrives, it’s there.”
In the near future, it will be possible to store ACD documents in the personally controlled electronic health, or eHealth, record. While it is already possible to add in who is holding a copy, when this capability is added, it will mean any health professional can access the ACD anywhere, anytime, which Cartwright says is very positive news.
“You need the documents themselves to be in there and to be immediately downloaded if you go into residential care or into acute care so that your wishes are known on the spot,” she says.
Aged care – a vital link
As an end of life destination for many, aged care benefits from their clients undertaking advance care planning. The sector also has a role in assisting clients with preparing their plans, Cartwright says.
“Community care is a vital link in the chain because advance care planning should be done while we’re all fit and healthy.”
However, for those who haven’t done it before entering residential aged care, Cartwright says it is a good idea for staff to raise it. But it has to be at the right time and introduced properly, she says.
“The wrong time is the day someone is admitted to residential care, they’re distressed; at a time when they’re having to leave their home,” she says.
Storing an ACD in the cloud
Approaching aged care residents proactively is the approach being rolled out across aged care facilities in Tasmania in the form of a cloud-based eHealth record system that enables comprehensive advance care planning centered on an individual’s values and beliefs.
Cradle Coast Connected Care, known as the 4C system, is up and running in five facilities in the north-west region of the state. And it is set to go state-wide with funding from the Department of Health and Ageing.
The system is an offshoot of the Living Well Dying Well (LWDW) project, which also began in north-west Tasmanian aged care facilities. LWDW aims to increase cooperation and communication between a person’s care-givers in the final stages of life.
Putting a person’s dignity, values and preferences at the centre of all decision-making is the philosophy underpinning both projects.
This makes 4C far more than an advance directive, says Barbara Ringeisen, eHealth Director with Tasmania Health Organisation-North West. “It goes much further to the patient’s wishes in relation to life, health, care and beliefs, which come out of the conversations staff have with the patients.”
The system includes three documents stored online. There’s an ACD recording the patient’s medical wishes and their enduring guardian; the Dignity, Planning, ACD summary and Goals of Care (DPAG), which collects a person’s preferences, based on their values and beliefs and registers diagnoses and disease trajectory; and Clinical Action Plans to manage care in preparation for expected deterioration and includes nursing and medication recommendations and preferences.
Ringeisen, who is the care-taker lead for the ongoing work funded by DoHA, says it is a dignity-promoting exercise that gathers preference and goal information through discussions with the resident and their nursing staff, family and friends.
She highlights that while doctors and nurses create the plans, it is critical for all staff to be involved. “It is important to speak to kitchen staff and lifestyle staff because they do a lot with the patient in their day-to-day life, especially at meal times or when entertaining them. That’s when residents mention things because it is in a more comfortable environment for them.”
The model also involves assessing residents to get a holistic baseline of their physical and cognitive functions and asking them about their clinical goals of care.
This information is used to inform care planning so treatments make sense. Depending on their goals and capabilities, it might lead to recommendations to make the person comfortable rather than opting for invasive treatment, Ringeisen says.
Extending access of the system to GPs is next on the project’s agenda, Ringeisen says. The long-term goal is to be able to share the plans over the cloud between GPs, hospitals, aged care facilities, and the community, especially those receiving an aged care package, she adds.
Reaching the marginalised
Support from family, friends and carers at the end of life is often an element of successful palliative care. But for members of the community with complex needs, such as a mental illness, social or economic disadvantage, and inadequate housing, their situation leaves them without a support network.
This has led Brisbane-based provider Footprints to undertake a six-month capacity building project so staff can help support socially isolated and financially disadvantaged clients, including homeless persons, with end of life planning.
“Over 90 per cent of our clients don’t have carers or family so they are very isolated. If you lost your job or you had a health crisis you would have networks to fall back on. But a lot of our clients don’t have that,” says Cherylee Treloar, CEO of Footprints.
Footprints tries to build those support structures so clients have greater independence, are more self determining and not as vulnerable to decisions being made for them, she says.
It has a staff of 60, and the organisation sees 800 to 1000 clients with complex needs of all ages a year. About half are over 65 or with health problems usually associated with older people, but which occur earlier among disadvantaged populations.
Over a period of 12 months, Treloars says her staff were touched by the deaths of a number of isolated clients.
“We began to see that some of these individuals didn’t actually know they were at end of life. They just simply thought they were sicker than normal, didn’t fully understand what was happening in terms of their health or really weren’t equipped to do much about it.”
As a result, and with a $20,000 grant from Metro North Brisbane Medicare Local, Footprints set about building organisational capacity to have end of life conversations with clients.
“It is about building confidence with how to introduce those conversations when working with a client. The other part is to know how to respond,” Treloar says.
The project involved training for several case managers, support workers and health assessors conducted by palliative care learning and research specialists. Project outcomes have included a resource directory for use internally so staff know the options available to clients, including creating advance care directives.
Giving people the opportunity to identify they are able to do something themselves is also really important, Treloar says. “Things like who do they want to be contacted when they pass away, or what happens with their possessions.”
Learnings from the project have been embedded in the organisation’s practices and there are a number of champions staff can call on, Treloar says.
And while the project is still in its early days, she says the conversations have started. In the coming months, data will be collected to determine the impact and benefits to clients and staff.