Being told you have terminal cancer and will most likely die from your illness is one of the most confronting experiences a person can endure.

It challenges all aspects of your life - your mortality, well-being, family and friends.

And while it’s inevitable that those with a terminal cancer diagnosis will have to manage the physical symptoms of their disease, the initial shock can trigger a psychological downward spiral which, if not taken care of, can have a detrimental impact on treatment and quality of life.

“Most people experience a grief reaction,” says Dr Steve Ellen, Director, Psychosocial Oncology Program at the Peter MacCallum Cancer Centre.

“A process of coming to terms with the diagnosis including waves of sadness, anger, disbelief and even a feeling they’re losing their mind.”

Dealing with these early feelings is crucial, however the psychological challenges arising from a terminal cancer experience don’t end with the initial diagnosis.

With patients facing physically strenuous treatment, changes in physical health and the fear of a shorter lifespan, mental health can be an ongoing challenge for people with incurable cancer. 

About two thirds of people with a terminal cancer diagnosis experience high levels of distress, and about a quarter will acquire an actual mental health problem, usually anxiety or depression.

“Managing your psychological well-being during cancer treatment can be hard,” says Dr Ellen.

“But doing so is very important, for a range of reasons.

“The most important is so that the person can face the challenges of cancer whilst feeling as strong, calm and ready as possible.”

While it can be tempting to dismiss poor mental health as an inevitable consequence of devastating physical health circumstances, failing to address it can have a negative impact on medical treatment.

“It’s much harder to adhere to treatment if you’re depressed,” says Dr Ellen.

“Getting to appointments, taking medications, everything is harder when you’re depressed or anxious.”

Which is why cancer centres, such as Peter MacCallum, are placing increased importance on the role of psychosocial support as part of the overall treatment plan for those with a terminal cancer diagnosis.

”Psychosocial support includes psychologists, social workers, psychiatrists, nurses, music therapist, art therapist and more,” says Dr Ellen.

“It's all the strategies used to help people cope with cancer and the treatments, including helping the families, and assisting with social problems like finances, housing and work.”

“Everything from improving sleep, helping with pain, feeling happier and more in control, through to more practical benefits like supporting family members, dealing with employers, accessing financial sickness benefits and getting to appointments.”

Psychosocial support can be obtained via a range of treatment options, including psychological therapies, family therapy, group therapy and support groups.

“There are many techniques available, depending on the person, their needs, and the phase of their cancer.

“Some techniques are relatively quick, like relaxation training, problem solving, education around cancer, whilst others are more involved, like psychotherapy or medications.”

But while the use of psychosocial support services is increasing, the importance of doing so remains significantly under-recognised.

“When people are first diagnosed, quite understandably, most of the attention is focused on getting treatment started,” says Dr Ellen.

“This is important, but if it's done in the absence of attention to well-being, the whole process risks falling over.

“A person who is struggling with life in general - getting out of bed, feeling motivated, feeling supported - will not cope as well with treatment.”

As both the medical profession and those living with terminal cancer become more aware of the importance of good mental health and well-being, the range and effectiveness of psychosocial treatments is rapidly expanding.

Encompassing a holistic approach to care, the Peter MacCullum Cancer Centre has adopted the Wellbeing Model, which is based on the believe that best practice cancer care addresses not only the treatment of the disease, but the social, emotional, cultural and spiritual issues associated with living with a cancer diagnosis.

The model is evidenced based and research led, and aims to develop into a multi-disciplinary model, applied across all clinical models of care.
“New treatments and strategies are being developed every year,” says Dr Ellen.

“New methodologies, with many taking advantage of digital technologies, such as apps, websites and online forums, which can help people in remote settings in ways we haven’t considered before.

“The future is bright, but raising awareness of the importance of psychosocial care is still a challenge.”