While community support for voluntary assisted dying may have focused on the right of West Australians to end their own suffering, the debate also shone a spotlight on palliative care – and the need to do more to ensure quality end-of-life.
By Eric Martin
Palliative care was cast, thanks largely to sheer juxtaposition, as the ‘choose life’ option for people with a terminal illness, yet research undertaken at St John of God Hospital Subiaco showed that significant numbers of patients who could have benefited from access to these services were not receiving them.
With demand for palliative care expected to increase by 50% over the next decade – and double by 2050 – Medical Forum spoke with the CEO of Palliative Care WA, Lana Glogowski, to discuss the need for doing death differently in Australia.
“Palliative care is actually more about life and living than it is about death and dying – and that is just so important. Palliative care is much more than symptom control and pain management,” she said.
“Those two things, of course, are critically important, and that’s what our palliative care physicians are focused on. But once a person receives a life-limiting diagnosis, palliative care provides a holistic approach to the patient. It’s about recognising those many and varied needs in addition to their clinical requirements.
“We need to be able to provide social work support. We might need to provide spiritual support. We might need to connect these people to a range of social networks so that they have the support they need for the last stage of their lives.”
Ms Glogowski said the research was clear that if people get early access to quality palliative care, they actually live longer because their holistic needs are being met.
“I really emphasise the importance of early access to palliative care, which has been a priority for a long time, but we’re a long way from being able to provide that,” she said. “At this stage, resources are tightly focused on the clinical support, but the social work and allied health supports, and pastoral care really need to kick in straight away.”
New awareness
Though the WA Government has expressed its commitment to growing palliative care, Ms Glogowski believes that what emerged from the VAD debate was a growing community awareness about its importance, especially considering the pandemic.
“The real upshot for us is that people are starting to talk about death and dying, which is a real taboo in our community that we need to break down,” she said.
“It’s important that people start thinking and talking it. All the debate in the media on voluntary assisted dying legislation has been good for us in terms of opening the lid on those conversations, and COVID has really encouraged people’s recognition of their mortality.
“For many people, this has been their first experience of death and dying. It may not be their immediate family, but it’s something that has been very evident across our communities, and that’s confronting for many people.”
Ms Glogowski emphasised the importance of those conversations with an unusual example from Palliative Care WA’s upcoming biennial summit, Doing Death Differently, to be held on November 24 at Optus Stadium – ‘death cafes’.
“These are safe spaces where people can talk about death and dying and ask the questions they don’t feel comfortable to ask family and friends – environments where people can explore their values and priorities around their dying experience and potentially that will lead to advance care planning,” she explained.
“It’s about making that discussion more acceptable for people to come together, to sit around a table with a coffee and a muffin and start talking about these things.”
She said that the biennial event would bring together politicians, palliative care, aged care and community service professionals, researchers, volunteers, policy makers, students, carers and community members to discuss future priorities for quality palliative care in WA.
Growing cohort
The VAD debate, she said, was accompanied by an increasing recognition that the baby boomers were now moving into retirement.
“That’s a big cohort of people, many of them are very well educated, they have been in charge of everything all their lives, and they want to be in charge of their death.
“We are starting to see the kernels of some quite amazing change, with increased interest in volunteering in the compassionate communities’ approach, and we have phenomenal uptake in our advance care planning workshops, with up to 120 participants recently in Kwinana.
“From our perspective, advance care planning is a critical entry point to palliative care.”
Advance care planning (ACP) is the internationally recognised term for planning for the last stage of a person’s life and Palliative Care WA has been funded by WA Health to run workshops across the State to encourage people to consider the process.
There are no age restrictions on ACP and it is not restricted to people who have a life-limiting diagnosis or were managing chronic disease.
“What we say to people is, you plan for the birth of your children, you plan your engagement, your marriage, your finances, and you plan for retirement. Why don’t you plan for the last stage of your life?” Ms Glogowski said.
“We recognise that people are fearful about death and dying, but what we put to people is that if you engage in the ACP process, it actually takes some of the fear away as you plan in a way that reflects your values and your priorities.
“It takes that responsibility away from your loved ones as well. So rather than putting it on your children, for example, to make those medical decisions that often need to be made in a moment’s notice when, perhaps, you’re actively dying –those decisions are made well in advance.”
ACP in WA involves making a will, filling out an enduring power of attorney, an enduring power of guardianship, and an Advanced Health Directive, and Palliative Care WA’s workshops help people to start to consider what their values and priorities are, before using that information to complete the forms.
Workshop value
“The workshops are often most people’s first introduction to palliative care and as part of those discussions, we talk to people about what palliative care really is,” she explained.
“We try and dispel the myths by providing positive information about how palliative care can contribute and try to discourage people from shying away from palliative care because they think it means ‘I’m going to die tomorrow’.”
The discussion also includes VAD, though Ms Glogowski explained that as the legislation currently stands, a person must have the capacity to seek and receive voluntary assisted dying, ruling out the use of such an option in the ACP process.
“As the legislation currently stands, people cannot nominate VAD as part of their enduring power of guardianship or their advanced health directive because those two documents come into play if, and when, someone loses capacity,” she said.
“If you have the capacity, right up to the point that you die, you make the decisions about what treatments you receive – when and how. If you lose capacity, then your enduring power of guardianship or your AHD comes into play – that is your voice speaking for you when you don’t have capacity.
“However, having said that, we do openly talk about VAD in our workshops. People want to know about it, people want to know whether that’s an option for them and we are forthcoming in sharing that information with people.
“We recognise it as an option at end of life and it’s important to acknowledge that most people who receive voluntary assisted dying will receive palliative care up to that point, the two are inextricably linked.”
The Advanced Health Directive is a treatment form directed at medical practitioners guiding their treatment of the patient during their end-of-life care and although Palliative Care WA can assist with completion, Ms Glogowski stressed that the person’s GP should be consulted.
“We really encourage people to consult with their treating team, GP or their medical practitioner in regard to finalising that documentation, because medically, they know you better than anybody,” she said.
“However, we recognise that GPs are incredibly busy and often don’t have the time to sit down with someone and work through this documentation – which can take hours – and that’s the support that we provide to the system: we have staff who are funded to do that work with people before they have that final conversation with their medical team.
Help at hand
“Our workshops help to inform people about these options and Palliative Care WA has recently unveiled the Advance Care Planning Support Service, where our team members will visit people in their homes to help them complete this process.
“Workforce is, of course, a significant issue for palliative care as well, but there is a growing interest in palliative care volunteer services.”
She said New South Wales and Victoria have highly developed palliative care volunteer programs that Palliative Care WA would like to emulate.
“We are working with a network of aged care providers and community organisations who are recognising that we have an ageing society, that we want our members to have a dignified end to their life and that there is a significant role for volunteering,” Ms Glogowski said.
“Which is why the Compassionate Communities approach is so vital – connecting participants with key people in their lives who may have drifted away, who may have become disconnected for a whole lot of reasons.
“It is critically important to try and reconnect people with their networks, be they formal, informal or both, so that people don’t feel alone at this vulnerable time in their lives.”
Recently released findings from the Compassionate Connectors program in the South West by Professor Samar Aoun, (Perron Institute Research Chair in Palliative Care at UWA, Head of Palliative Care Research at Perron Institute, and Adjunct Professor at La Trobe University), showed the initiative had been effective in improving social connectedness, reduced social isolation, increased supportive networks and built the capacity of the community and the palliative care team to work together to deliver quality care.
Research leads
“Professor Samar is part of an international movement [the Compassionate Communities Network, co-founding the South West WA branch in 2018] recognising that we will probably never be funded well enough to provide that holistic support to people from the moment of diagnosis, and that there are community resources, which currently aren’t being utilised,” Ms Glogowski said.
“Her Connectors Program is a fascinating example of training volunteers to work with individuals and families to help them connection with both informal and formal supports. They guide the families in finding people in their community who may be willing to make a little contribution, be that walking the dog, mowing the lawn, taking them to their appointments or doing a pharmacy run.
“And that is hugely therapeutic, we shouldn’t underestimate the power of a community working with someone who was unwell so that they feel loved, valued and supported.
“Obviously, the clinical services are hugely significant, but we need to do that in balance with activating community support so that people don’t feel isolated, that they feel supported by people who value them and who are willing to make a small contribution to a person in the last stage of their lives.”
ED: Doing Death Differently summit is at Optus Stadium, November 24, 7am-3.15pm.