Shedding a light on palliative care – leaders have an opportunity to educate as well as manage

As Australia’s palliative care week draws to a close, leaders are keen to highlight that the opportunity to inform, support and connect doesn’t. As families continue to see palliative care as only permitted when conditions become “very bad”, experts hope to support a changed conversation. Preparation and guidance, at any time, is the sector rising to establish a process to minimise confusion, isolation and stress. A key point in supporting the conversation around palliative care is to honour what it can be, uncomfortable. Death, its finality, and approach is a weighty, complex and multi-faceted reality all people will have to face. For those who have felt called, and shown up to make palliative care its best, it is vital that no one feels alone in this time.

Mark O’Brien is the CEO of Prestige InHome care, and as a leader, but more so as a person, he shares his insight from years of hearing from clients, and the staff that are doing the almost inexplicable work of walking alongside people, as they approach a finality that everyone will one day navigate. There are no tidy bows, or crisp messaging that can tie up palliative care ‘nicely’, that’s the point. Providers, and particularly their leadership, have an opportunity to enter into the conversation in truthfulness, authenticity, to sit in the discomfort and to shape best practices, best policies that protect and uplift staff and clients in the confusing, complex, and ubiquitously human.

Multifaceted palliative care

O’Brien shares that there are perceptions about palliative care that must be met and walked alongside, to open up how people see the possibilities in this care, “for some families, the term “palliative care” can create discomfort and is often misunderstood as signaling that treatment options have ended, when in reality it can be delivered alongside active treatment and earlier in the course of the illness.”

“Palliative care is often seen as a loss of independence or a sign of “giving up”.” This he believes must be changed, not through rhetoric but reality. 

Providers, he advocates, can raise the offering of what services can and should be, “however, as a palliative care provider, our main goal is quite the opposite: to support a person to maintain their independence and quality of life while living with a life-limiting illness.”

He also shares insight on undercurrents, pulling at when palliative care can be used to support best quality of life, “there is also a common misconception that palliative care is only appropriate in the late stages of illness, rather than something that can be integrated earlier.”

“Understandably, many people believe they are still “too well” to need or receive palliative care.”

Those who need should receive

An important narrative O’Brien hopes to contribute to is who deserves, or can benefit from, palliative care, “it is also worth noting that palliative care is not exclusively for older people. While the majority of palliative care is delivered to older Australians, younger people can also be affected by life-limiting illness.”

Part of the obstacles to younger people accessing this valuable care are higher bureaucratic hurdles, many of which advocates are calling to be altered. O’Brien shares the reality of the situation, to confirm that for those that are younger, there remains difficulty, “government-funded in-home support pathways such as the End-of-Life Pathway are only available to older Australians, which means younger people who need practical in-home support often have no clear government-funded pathway and may need to access these services privately.”

Leaders have an opportunity to speak into the real-world challenges, however banal and steeped in paperwork, for both young and old, when it comes to accessing highly needed palliative care. O’Brien notes, “the complexity of the healthcare and aged care systems can also contribute to delays, with different levels of care, funding arrangements, and referral pathways making care difficult to access and navigate.”

From many cases he has seen, he encourages families, those navigating diagnosis, to feel affirmed and encouraged to start the conversation as early as they need. Providers, he says, can be ready at any stage to support by answering questions, providing advice and being the experts of substance in one of the most difficult times in a person and family’s life, “palliative care may be introduced early, even when a person’s condition is progressive and their needs are becoming more predictable.”

Supporting logistics

O’Brien, alongside countless other provider executives, has noted a sharp uptick in confusion since the Support at Home introduction. Confusion, on top of deeply distressing diagnosis and navigating end of life has intensified what people across Australia are trying to manage in their homes, in their lives, and with their loved ones.

Providers who are ready to talk through the changing process, to wrestle with bureaucracy are in a key position to alleviate high levels of stress.

He explains how clarity provided from within his organisation has helped, explaining, “referrals are typically initiated through My Aged Care, where a reassessment or support plan review is requested to reflect the client’s changing needs, including end-of-life care.” It is not just supporting navigating the system, it is that providers will be alongside for as long as it takes.

It is in unpacking this that the outside components to the conversation, of what palliative care can be, in its entirety, are deepened. As seniors are waiting longer for reassessments, providers who are able to commit to walking alongside, enduringly, are not just gaining reputational rapport, they are proving operational substance through relational longevity.

Changing sector norms

O’Brien sees an opportunity to change sector norms in the handling of palliative care. Within the logistics of timing, and when people believe they can and should start the palliative care conversation, there are areas to improve professional approaches.

Particularly when it comes to referrals, O’Brien sees an area of change to bring benefit, “from a sector perspective, referrals to palliative care are often made later than ideal. This can be due to a range of factors, including delayed recognition of clinical deterioration, hesitancy to initiate end-of-life conversations, and a lack of understanding about what palliative care can offer beyond the final days of life.”

Providers, alongside care partners, have an opportunity to step into educating and informing, to change perspective and the possibilities that result. O’Brien sees the work in strengthening ties with partners as going beyond operational strength, to spread skills and approach to meet difficult questions with sensitivity, accuracy and gentleness.

“Our team works alongside GPs, hospital teams, pharmacies and specialist palliative care providers to deliver palliative care safely at home and set up services urgently where needed”, he says.

“Earlier referral and engagement with palliative care services can significantly improve client outcomes, allowing for better symptom management, advance care planning, and alignment of care with the client’s preferences.”

Supporting sector pro-activeness

The need for providers of substance, made up of trained, supported and sincere staff is only growing in demand within palliative care. O’Brien champions providers and leadership teams that are deepening the groundwork, in policy, practice and ‘practising what you preach’, in the business and transparency of how providers manage palliative care.

“Providers need strong frameworks for palliative care to enable the sector to be sensitively proactive. Over the coming years, as the demand for palliative care increases, the expansion of workforce capacity and increased funding will be vital to ensure high quality care is delivered to all those who need it.”

As the concerns surrounding staff burnout, particularly in an area of death’s weightiness and complexity, he shares there are no short-cuts to looking after staff, “staff training is crucial – not only in recognising the clinical changes in a person’s condition and knowing when to initiate conversations with the family, but also in building the confidence and communication skills to have those conversations with sensitivity. That way families are prepared and guided prior to the risks getting more severe.”

Investing in staff, investing in supporting them to be professionally, emotionally and physiologically safe is good business. It leads to a depth of care that will resound in the market, and in people’s lives, “equally important is recognising the emotional toll that palliative care can have on care workers themselves. Supporting a person and their family through end of life is one of the most meaningful – but also one of the most emotionally demanding – aspects of care work.”

Policy and practice that deepens care for staff should not be seen to fit only in the ‘ethical’ and ‘soft skills’ category of business. Growing numbers of executive cohorts and leaders attest, genuine care for those on the ground, doing intense emotional labour, is best business sense.

“Providers have a responsibility to ensure their teams are not only clinically equipped but also emotionally supported. This means investing in regular clinical supervision, access to wellbeing programs, mentoring, and creating a culture where care workers feel safe to talk about the emotional weight of the work they do. When care workers feel supported, they are better placed to deliver compassionate, high-quality care to their clients and their families.”

A supported workforce translates to a readiness to meet the messiness, the confusion, the unavoidably challenging, in the work of palliative care. It is not only worthwhile to executively plan and allocate resources to protect staff and smooth administrative processes, it means that the expression of care will organically and consistently be what clients need, “systems to support communication, care planning, and early engagement should also be in place. When properly implemented, providers can make care available in a timely and compassionate manner.”

Agility in meeting needs

As more and more seniors are set to approach palliative care in the years to come, O’Brien emphasises the opportunity for providers to be agile in responding to what is presented by the client, not in dictating how care should function.

“Emotional and spiritual needs are just as important as addressing personal care needs.”

Providers must be ready to treat all areas that need care, “people with a life-limiting illness often experience fear and uncertainty about the future” and all those in the orbit of direct care too, “at the same time, families start to experience grief – leaving them helpless.”

“It is important for palliative care workers to be trained to respond with empathy and respect to each individual’s preferences… we have a holistic approach to in-home palliative care, where care is centred around all of the person’s specific needs and preferences.”

Broader perspective

O’Brien sees benefits from leaders opening up their macro standpoint on what scope of care can be, “from our perspective, and from a personal standpoint, palliative care has a much broader and more meaningful purpose. It is not simply about recognising that a person may be dying, but about improving quality of life, relieving discomfort, providing comfort, and helping people and their families live as well as possible.”

“It also plays an important role in assisting people and families through difficult decisions, particularly at times when care needs, treatment options, and emotions can feel overwhelming.”

Confusion on when to seek care, opaque logistics in navigating the system, complicated family dynamics, carer burden, perplexing medication approaches, O’Brien has heard from families overwhelmed by all of these reservations and stressors when it comes to palliative care.

He champions that they should and must hold weight in, “driving policy and industry change by showing where families are still feeling confused, overwhelmed, and underprepared.”

“They [reservations] highlight the need for earlier conversations, clearer explanation of provider roles, better support for planning ahead, and funding models that recognise the time and education families need to prepare for care at home. Overall, they point to the importance of a more coordinated, family-centred system that helps families feel informed and supported rather than left to navigate this alone.”

Scope, planning and standards of success can be elevated, O’Brien advocates, “industry change should also focus on improving understanding of the role of palliative care”.

“[It should] not [be] seen only as care for the final days of life, but as an approach that can support quality of life, symptom management, and care planning throughout serious illness.”

This depth of palliative care, in scope, in planning, in support for clients and workforce, in education and walking alongside people, is what is deserved, O’Brien shares. And it is equally good, energising and beneficial to those committing to care provision this way.