Raising the community's voices for better palliative care

John's first exposure to the world of palliative care came in early 2016, when his late wife, Jane, reached the final stages of pancreatic cancer.

John and Jane hadn't given much thought to the idea of palliative care until things became really bad, and even then, they held the view that palliative care was just somewhere people were "parked" while they waited to die.

However, when palliative care became involved, Jane's situation improved markedly and their perspectives changed. With the benefit of hindsight, John recognizes that the referral to palliative care came far too late.

Evidence clearly shows that palliative care improves the quality of life of patients with advanced illness and their families and caregivers—whether physical, psychological, social or spiritual.

Despite palliative care being recognized as an essential component of universal health care, with calls for it to be recognized as a human right, the World Health Organization (WHO) estimates that still only 14% of those in need of palliative care receive it.

Furthermore, it seems that much of the palliative care delivered is restricted to end-of-life care, commonly the last weeks or months. This is at odds with evidence supporting earlier integration of palliative care.

Although nearly all health care professionals will inevitably need to provide palliative care, the overwhelming majority do not receive any formal training; nor is there sufficient investment in research funding to underpin care provision.

Now, some years later, John has seen and understands the evidence that earlier access to palliative care leads to better outcomes for people with advanced cancer.

This knowledge, and Jane's and his experiences, have galvanized John to make other people in the community more aware of the value of these services.

This led him to Voices for Palliative Care.

Voices for Palliative Care (or "Voices" for short) is a group of people with lived experience of serious illness, who are committed to ensuring community and consumer voices contribute to research in palliative care. This includes involvement in health service planning and advocacy for improvements in care for people with advanced illness.

Community and consumer involvement has long been a feature of other areas of health delivery or advocacy and is now considered a vital component of research, but the opportunities for this to occur in the setting of palliative care are much fewer.

People with advanced illness are often navigating intensive and sometimes difficult treatments, as well as progressive fatigue and ill health. Meanwhile, their family members are frequently very busy providing support and care with little time for their own needs.

This means that there has, until recently, been little consumer and community input into research, policy, service development and advocacy.

In Voices, many members like John have been caregivers of someone close who has or could have accessed palliative care. Others are passionate community members who see a significant health and societal need to be addressed.

A key focus is raising the community voice—ensuring people with serious illness and those around them are accessing the best possible care.

John reflects that the reluctance of medical staff to refer Jane to palliative care earlier may be related to several factors; the view that palliative care is an admission of defeat; a dislike of breaking bad news; and a fear of an adverse reaction from the patient and/or caregiver if the subject is raised.

This reflects a problematic misunderstanding of palliative care, from both the public and health care providers, which is echoed in our recommendations for reframing how palliative care is presented.

Palliative care is too often considered, in the minds of both health care providers and the public, as exclusively about death and dying, and associated with a loss of control or abandoning of hope. John's view is that if people knew what palliative care can offer, they would take it.

And so he is raising his voice.

Other members are also speaking out. Imelda reflects on the power of having knowledge as a caregiver:

"When we empower them to have a voice in negotiating for the very best in care, we help them to become partners in this palliative care journey … Rather than feeling helpless and swept along with the necessary treatments, moving through an unfamiliar medical minefield, they can learn to take control, influence decisions, ensure that the values of their loved one are brought to the forefront and respected, and they can come through this traumatic time with the knowledge, after their loved one's death, that they 'did it well'.

"The benefits for a caregiver/relative's mental health following an end-of-life journey which has been compassionately managed through clinician/consumer teamwork are very significant."

Voices is an initiative of the Palliative Care Research Network, a group of over 500 palliative care clinicians and researchers who, with support from the Victorian State Government, work to foster collaborative scholarly enquiry in order to enhance the evidence base of palliative care .

Voices offers a platform for researchers to engage with community members and consumers, either collectively or individually, to enrich their studies and projects.

Since the group was established in 2022, Voices members have joined the investigator teams of several research studies, covering areas like telehealth and care of people with high-grade brain tumors, and have contributed to consultation and review processes for national service development related to priorities in cancer care.

Further, they have advocated for medication availability and consumer involvement in palliative care.

In 2024, their work is focused on developing a public awareness strategy to share their message about the importance of resourcing palliative care and promoting the benefits that palliative can bring to the well-being of people with serious illness and their family caregivers.

For John, the message is clear—once palliative care became involved things were much better for he and his wife Jane.

When it comes to what you or the person you are caring for need, if the subject of palliative care is raised, don't be afraid, don't be intimidated and above all, be prepared to speak up if you don't understand something.

Provided by University of Melbourne