Supporting Those Who Care

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-By Aleisha Parr

There comes a time in each person’s life when he or she must focus not on surviving, but on thriving. All too often, we shy away from conversations on death, opting instead to be captive to some of our deepest fears and insecurities. In doing so, we deprive ourselves of the opportunity to live out our lives to the very end with passion, dignity and determination.

“We recognise some people will never want to talk about their own death,” says Tracey Watters, “but there are many people who, when they do become unwell, that’s what they want.”

Ms Watters is the Executive Officer with the Palliative Care Council of South Australia, a recognised Public Benevolent Institution (PBI) with deductible gift recipient (DGR) status. The not-for-profit organisation was formed in 1982, with the goal of providing quality care for individuals facing death and bereavement.

“We aim to encourage people to know that it is absolutely okay to talk about dying,” she continues, “and to talk about what worries people about that, not to just have to hide it away in the cupboards [to be] spoken of at a different level. Part of our work here is to make death and dying much more a part of life. It’s about living and living well until your time.”

Through advocacy, policy development and public and professional education, the Council has played an integral role in the formulation and introduction of standards for providing quality palliative care for all Australians in collaboration with the national peak body, Palliative Care Australia. With the support of its patron, Mrs Liz Scarce, wife of His Excellency, Rear Admiral Kevin Scarce AC CSC RANR, Governor of South Australia, as well as public support and individual goodwill, the PCC of SA endeavours to promote the National Standards Assessment Program (NSAP), a voluntary program complementary to existing formal accreditation programs for palliative care and other health and aged care service providers.

The Council’s members include the general public, future and present clients, professionals, clinicians and academics with an interest in caring for people who are dying. Explains Ms Watters: “We work to improve the choices for care available to people with terminal illnesses – no matter the disease process.”

Before the advent of modern medicine, lengthy survival was extremely rare, and people had few treatment options open to them. It was the doctor’s aim to keep the patient comfortable. As the study of medicine became more and more focussed on developing cures, the inability to cure came to be seen as a medical failure. The PCC of SA has made it its mission to reintroduce the mindset that while death is an inevitable and natural part of living, steps can be taken to make the process more comfortable and less alienating.

Ms Watters says that while evidence shows that helping people to find methods of pain relief or outlets for their emotional and spiritual distress can play a remarkable role in making this process more comfortable, the broader health professional community has been slow to adopt the level of specialised skills required to do so. In addressing this disparity, the Australian Government Department of Health and Ageing introduced a program in 2003 which provides opportunities to members of a variety of primary health care disciplines within the palliative care approach. The Program of Experience in the Palliative Approach (PEPA) allows these practitioners to undertake a clinical attachment within a specialist metropolitan or larger regional palliative care service.

Explains Ms Watters, “It’s not to create specialists, but to expose them to [an] environment which is a little different to the acute environment. A palliative care environment is completely different in that it is okay to die, that you’re not up against that. PEPA is about dropping [practitioners] into that space so that they can get an experience around what the differences are in the routine care that they might have, given their role as an acute care professional and what is really not routine in palliative care.”

Palliative Care has been identified by the Productivity Commission as core business for the aged care industry. It is therefore crucial that this industry is supported to implement appropriate palliative care. “To do that,” says Ms Watters, “it seems that we have to extend the education to the health workers and assistants and really right through from the cleaners to the CEOs. We’re hoping to develop and roll out a program across South Australia, which could eventually be promoted nationally if we could find the right partner for it.”

Partnering with businesses has a dual purpose. Not only does it reach into a community that the Council traditionally wouldn’t have access to, where the people are prepared to acknowledge palliative care as an important issue, but it also raises awareness. “I think the potential spinoff to that,” explains Ms Watters, “is the ability for workplaces to perhaps be more sensitive and aware of the needs of people within their own workforce who may be bereaved or facing terminal illness yet who are still trying to work.”

“Very often they don’t find the listening ears within their own families,” adds Dr Mary Brooksbank, Chairman of the PCC of SA. “So, workplaces could play quite a big role in that. If business led the way by being proud of its partnerships that’s just another opportunity for people to tell their stories and feel as if they are being heard and supported, which we feel is really important.”

One more important way in which the PCC of SA is encouraging people to share their stories is through its emphasis on linking volunteers to individuals facing terminal illness. Although a plethora of volunteer roles exist whereby volunteers assist in the administration of medical care and support, Ms Watters and Dr Brooksbank both assert that perhaps the most positive experiences arise from volunteer activities unrelated to the actual illness, such as shopping excursions, salon appointments and other community based activities.

Explains Ms Watters, “When I worked within a specialist hospice environment, it always seemed they brought a sense of life and continuity and connection within the community. They represented more than just the individuals they were.”

Adds Dr Brooksbank: “I think it’s a special paradigm of illness, that very often you’re isolated by your illness, so volunteers are a very grassroots reality for helping.”

Related to this push for volunteerism, the Time to Remember campaign (www.timetoremember.org.au), spearheaded by Ms Watters, encourages individuals to celebrate the lives of friends or family who they have lost by hosting personal events. “Tracey has really driven this amazing campaign from the start,” affirms Dr Brooksbank. “People are invited to run an event – not just a morning tea, it can be drinks or any type of event – with a ‘Time to Remember’ theme. The materials are available through the website and people can actually nominate where they want their money to go to. I attended two of them; one was held by a colleague of mine and people were just so happy to be able to be there and donate, but it has taken money to get the whole thing off the ground.”

Ms Watters’ pride is obvious – though it is her dedication to the lives touched by the work of the PCC of SA which clearly drives her. “People really appreciate the opportunity to tell their stories and to have that acknowledged,” she says. “One of the things about palliative care is that, though there is a broader understanding perhaps now in the community, it’s still very difficult to talk about.”

In fact, the PCC of SA has been monitoring the level of understanding by the broader public of the term “palliative care.” Looking back to 1995, the percentage of respondents who identified the term as relating to caring for people who were dying, controlling pain and other symptoms or looking after family was a dismal 35.9 per cent. In 1998, it rose to 51.8 per cent and in 2004 it was up again to 63.4 per cent. “You can see that there has been a great increase in public awareness around palliative care, which is good because it means that people are more likely to start to ask for help when they need help, which is really the main goal.”

Ultimately, Ms Watters stresses that the most important aspect of the PCC of SA’s work today is to connect with and engage every General Practitioner in South Australia in order to ensure that palliative care is top of mind. In doing so, Ms Watters says the goal is to make certain that GPs will be armed with the necessary knowledge, resources and support to provide the proper care for each patient who could benefit from palliative care. Such an undertaking of course will require the support of many stakeholders, including businesses with an interest in partnering on the initiative, but it truly would be an investment in the emotional, physical and spiritual well-being of our society as a whole.

Making Sense of Management

Management is the art, or science, of getting things done through people. Sounds fairly straightforward – except for the fact that people are not robots waiting to do our bidding. People have their own minds, motivations, and goals. So how do managers keep operations – and the people behind them – running as planned?

July 20, 2018, 9:04 AM AEST