Dealing with death, a beautiful paradox – home care CEO shares how unseen palliative work can have the brightest impact

Strict professionalism or only emotions, when it comes to dealing with death, palliative care professionals have found that weaving emotions into policy, and instituting procedural checks for the grey areas of multi-faceted feelings, can equally protect and safeguard. They are as important as each other. With or without an MBA, with or without years of executive leadership experience, death is a weighty topic and unavoidable reality. For executives who have been in this work for decades, professional and personal lessons, as well as wisdom, emerge. Sharing them with a wider community goes beyond reputational advantage, what is at stake is supporting a sector and way of doing business that gets to the core of living so people can approach death as best they can. As people who will meet death one day, Mark O’Brien, the CEO of Prestige InHome Care and his team, have grappled with this reality, so as to lead a professional organisation to be a light in a space that is complicated, weighty and inevitable, to realise the potential of kindness and viable service in it. Professionally excellent, deeply discerning and unapologetically heartfelt are key ingredients O’Brien champions in approaching palliative care for clients, and supporting front-line staff with the exact same.

Policy meets people

“A young woman in her 30s was referred to us from hospital. She is sadly palliative”, O’Brien starts to share, “but her request to us was not about illness – it was about love.”

In drafting policy on how palliative care processes are to work at Prestige, in shaping the scope of how staff are to care, wrestling with rising insurance costs to cover that care, rising fuel prices, to sit with the legal team to support staff traveling away from residences, management measures land in human lives.

O’Brien shares a story that brings this sharply and beautifully into the reality of our world. Where palliative care, the immense logistical and business management of it, shaped by personal conviction, can be known for what it is, unseen and highly-involved work, supporting someone to live brightly.

“Her dream was to be discharged for a few precious days so she could marry the love of her life in the vineyards. She wanted, just for that day, to feel like a bride – not a patient.”

Strict professionalism was important, logistical and medical compliance had to be met, “making this possible required careful, thoughtful nursing support – a wheelchair, a syringe driver, constant monitoring – all delivered with absolute discretion.”

And while professional planning was critical, “every detail was considered, from managing equipment beneath her dress, to agreed words she could use to quietly signal pain”, so was balancing the desire to honour the preciousness of a bride’s day, “to ensuring our nurse was right beside her without ever taking away from the magic of the moment.”

For O’Brien, and everyone on the team that worked to support clinical and emotional care on that day, delivering professionalism and safeguarding preciousness was palliative care. 

“What her husband and guests saw was a radiant bride, love, joy and celebration. Behind the scenes was a different reality: coordination, expertise, dedication and deeply personal care.”

Resourcing discernment

O’Brien shares that far from the rigid boldness displayed in many a Hollywood film about business executives, where it’s ‘my way or the highway’, when it comes to palliative care management, leadership and operational function must be buoyed by the flexibility to listen and discern, “we hold ourselves to a higher standard, and we approach our work with compassion, humility and respect for the families who we support.”

“Often it is the little things that make a difference in palliative care – massage, baths, music, scents, grooming, a familiar environment and the comfort of pets or friends and family. We draw on 20 years of experience to guide our clients and their families through difficult choices, ensuring they feel safe and valued.”

Rigidity or strict professionalism cannot yield the agility of process that comes with palliative in-home care. O’Brien and Prestige staff have experienced time and time again, each family brings a new set of needs, worries, confusion, complexity, “we appreciate that every family, every home, and every situation is different, and we respect this in the way palliative care is planned and delivered.”

The agility to react is a core element of process, O’Brian notes. So too must be the ability to sit with families, to listen and discern what needs and desired approaches are. That takes time, it takes patience and operational resources where staff feel empowered not to rush.

Difficult means depth

Palliative care means entering into the difficult. Death, in its physical and emotional demands, impacts people differently, at varying times, at varying intensities, many times without warning, rhyme or reason. O’Brien and the Prestige team have earned insight from being alongside people approaching their death, and their loved ones surrounding them. To be in this “difficult” demands substance, “for more than 20 years, Prestige Inhome Care has been supporting families through some of the most difficult periods of their lives.”

“In that time, we have learned that palliative care is not just a service – it is a reflection of what you stand for as an organisation and as people.”

O’Brien shares there is no shortcut. From the highest-level executive to the newest casual hire, professional excellence and personal conviction are non-negotiable. 

“At its core, our approach is built on a belief that every person deserves to be cared for with dignity, compassion and respect, particularly as they near the end of their life.”

O’Brien shares that personal conviction must impact systemic policy creation, maintenance and operation, “that belief runs through everything we do – from the way we plan care with families, to the way we train and support our care workers, to the way we collaborate with GPs, specialists and hospital teams.”

Meeting confusion

A concerning trend that executives can meet, O’Brien highlights, is the delay that some families are undergoing before accepting palliative care, “many families delay accepting palliative care in the early stages of a serious illness, while they are still navigating their treatment options and coming to terms with what support is needed.”

To see this concern, he shares, is to respond by leaning in with answers, resources and clarity. From the many families he has spoken to, navigating the system, treatment options and support is profoundly daunting, “for many families, palliative care seems overwhelming given the number of services involved, conflicting advice, and the need to repeat your story multiple times to different medical professionals.”

“These experiences contribute to hesitation, confusion, and distress at a time when families are already under significant emotional pressure.”

Leaders in palliative care have an opportunity to enter into the conversation, to be a resource. Changing the narrative that palliative care is only ‘deserved’ when someone is imminently approaching death is to move away from a harmful and untrue rhetoric, O’Brien shares, to a sector providing pro-active clarity in an acutely vulnerable time.

“Families should hold providers to a standard of providing compassionate and personalised palliative care that addresses their needs. Quality care includes comfort, symptom management, and emotional support while respecting the person’s dignity and independence. It is recommended that families seek clear communication and proactive staff who listen to and guide them in decision making throughout the process.”

He names the consequences, hundreds of Australians and their families are reeling from, “leaving palliative care to the last minute, limit[ing] the benefits it can provide, which includes symptom management and improved quality of life for those with a life-limiting illness.”

“In contrast, early integration of palliative care can improve patient outcomes and may, in some cases, also prolong life.”

Coordinated effort

Palliative care cannot be done in isolation, for staff, for leadership, for the sector, O’Brien recognises. From executives to staff, from provider to outside care and health systems, supporting partnerships of smooth communication, trust and collaboration isn’t a nice-to-have, it’s operational oxygen.

“Providers should ensure adequate resources are allocated to staff training and systems that support early engagement – resulting in better outcomes in the later stages. The foundations of a strong palliative care program include highly trained staff comprising nurses, carers and office staff, including team members with the necessary clinical expertise to address complex care needs, plus a holistic, compassionate approach that fosters dignity and comfort”, he says.

“Finally, the right approach to shared care facilitation is vital. Being able to work closely with GPs, hospitals, specialist palliative care teams and other health professionals to ensure seamless, timely care is crucial to delivering a high standard of palliative care in the home.”

Who is the client?

While it may be a core client who has entered into palliative care, O’Brien highlights that they have come to deeply know and honour the wider reach of death on the whole family. To plan and resource for only one person, O’Brien shares, is to ignore the wider web that has enriched a human life. And those connection points are two way channels.

In sitting down with family members, staff he shares, have sat in the messy and sometimes despairing moments of complicated. To gloss over this, to twist into a positive take-away is to dishonour what people go through, and the heaviness staff manage every day in their roles. 

Family members, dealing with loss, even before death, are trying to navigate what it is to care, wondering what it even is for them, for their loved one. 

This, O’Brien shares must be a part of the provider palliative care offering. Easing pain and caring, emotionally and physically, for a person approaching death is critical, so too is supporting their informal care network.

“Families often tell us they just want to be a wife, a husband or a daughter again, rather than feeling consumed by the practical demands of care. Wherever possible, we aim to ease that burden so loved ones can spend time sitting together, listening to music, holding hands, and simply being a family.”

But discernment is always a hat that must be worn with compassion and tact, an one-stop-policy-shop cannot sustain the agility required, it may be different for others, “at the same time, we respect that some families want to remain closely involved in caring for their loved one, including with personal care, and we see this as an important part of care planning.”

O’Brien is regularly in contact with staff, they see the importance of caring for their palliative care client, and the family-members in their orbit, they are all a part of the solar system they want to support bringing light to.

Executives must be in touch with front-line staff doing the work, from his proximity with those who are doing the work day-in and day-out he has seen, “a genuine, shared commitment to care excellence and the best possible experience for every client and their family.”

Not easy

O’Brien affirms, “palliative care can be emotionally challenging for care workers.”

In setting up a provider to provide excellence in palliative care, as important to managing cash flow, personal belief in the work and clinical skills, O’Brien sees support for staff as must to be entrenched in routine and consistent policy. The quality of work he sees is already there. Management has an opportunity to protect and safeguard staff from burnout due to the powerful convictions spurring them on anyway.

“Our people don’t do this work because it is easy. They do it because it matters. They bring skill, empathy and heart to every home they walk into, and they hold themselves to a standard that goes well beyond what is required.”

“We pride ourselves in caring for our staff with the same level of dedication that we demonstrate for our clients”, he says.

“We ensure our staff receive client-specific training for complex care, and the right support to enable them to provide care in the home comfortably and safely. Staff should also feel valued and heard, and we always provide easily accessible channels for them to voice challenges and concerns, aside from mentoring and wellbeing initiatives.”

Setting and forgetting is not a leadership method that supports the realities of palliative care, “our dedicated clinical consultants work together with the care team and the family to regularly assess and respond to any changing needs, ensuring everyone feels supported throughout all the stages.”

“Our team’s wellbeing is more than a priority. It impacts the lives of people in their care. We take our duty of care to our care staff very seriously, and make sure all office and direct staff have access to our Employee Assistance Program and key support people who will do regular check-ins with them during and after palliative care has been delivered.”

Alongside

To be in palliative care, O’Brien shares, must be to, “focus on improving quality of life, providing comfort and helping families navigate one of the most difficult decisions they will ever make.”

Operational management, systems creation, budget priorities can be guided by the belief that, “palliative care is about honouring a person’s dignity, their wishes, and the small moments that mean everything.”

Far from the bright lights other sectors tend to shine on themselves, he shares that the work of palliative care is no less fantastically important for being unnoticed, “so much of the work we do is unseen, but it is profoundly meaningful”.

“And after more than two decades, that purpose remains at the centre of who we are.”