Live well with advanced cancer

Although many of us can benefit from the extraordinary advances made in cancer treatment, there are still around 45,000 Australians each year whose cancer cannot be cured.

This large group of people deserves the same level of attention and investment in improving their lives as is directed at treating cancer itself.

Controlling symptoms such as pain, having access to good information and knowing what to do if problems arise contribute to better health outcomes. As well as empowering people to explore their values ​​and make decisions to ensure that the care they receive reflects these ideals.

Palliative care focuses on all of these things. And works.

There are now six meta-analyses – large studies combining data from many other studies – which suggest that early access to palliative care improves a patient’s quality of life, lowering levels of anxiety and depression. Four of these analyzes also show that people live longer.

Yet timely access to palliative care in Australia is patchy at best, meaning most people miss out on these benefits.

Why the delay?

Our research showed that around 69 per cent of people dying from cancer in Victoria received palliative care in hospital an average of 20 days before death.

Twenty days is simply not enough time to build trust in community care networks. It is too late to think about what might be important when considering a life well lived, and then set about realizing those things.

Several factors contribute to this gap between best evidence and practice, including the structure of existing palliative care services – which are often focused on hospital or home care – and uncertainty about when and whom to refer for palliative care.

A significant additional barrier is people’s perceptions of what palliative care is and the fear of what it means to be referred.

The ‘image problem’ of palliative care

My research team conducted a series of interviews to better understand how people perceive palliative care.

The responses we received suggest that many patients are hesitant to access palliative care because they think they are ‘put in bed somewhere’ or ‘tied to a morphine drip in the last few hours of life’.

This (mis)perception means that palliative care is often associated with imminent death, making it difficult for clinicians to introduce the concept to patients for fear of destroying their sense of hope.

As this difficult conversation is put off, we risk losing the comfort and creative possibilities available to live well in this important phase of life – however long it may be.

It offers an extra layer of support

Our research team created an early integrated palliative care model, called Care Plus, designed to explicitly address these barriers and form a routine part of the treatment pathway for people with cancer.

Care Plus is designed to be introduced at an agreed trigger point of an individual’s disease, with anyone reaching that trigger gaining access.

A team of palliative care physicians and nurses then provides care tailored to the patient. This may include: alleviating symptoms (which may be physical, emotional, spiritual or social); providing support for the family; connecting patients with additional information and support services; and helps patients consider decisions and plans for the future.

Configuring palliative care as a standard aspect of best quality care or “part of what we do now” normalizes it.

We describe Care Plus as an extra layer of support integrated into the oncology care team rather than as a separate ‘add-on’ service. This means seamless care for patients and families and built-in collegial relationships between clinicians, further improving care coordination.

To ensure easy adoption, we have developed a series of resources designed to help clinicians offer Care Plus. These include service introduction guidelines where clinicians are encouraged to describe the activities that Care Plus provides before telling patients that palliative care teams are the experts in this area and will provide this support.

This allows patients to hear and consider the benefits before hearing the words “palliative care.”

Our recent implementation study, supported by the Medical Futures Research Fund, showed that Care Plus is both feasible and acceptable. Families reported feeling supported by the service, which provided coping strategies to people close to the patient, and clinicians found the onboarding process seamless.

Ultimately, the aim of Care Plus is to ensure that people with advanced illness and their families have the support they need to live well and plan for their future.

As one patient summed up, “I thought [palliative care] just take care of those who die. But it’s much bigger than that – it’s caring for those on the road.”

The Care Plus Implementation Pack of resources and strategies is available for services wishing to adopt this model in a clinical setting.

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