When Michael Mulchrone learned the lung cancer he thought long gone had migrated to his brain and doctors mentioned palliative care in 2015, he was fearful of the journey ahead. A year-and-a-half later, Mike says palliative care wasn’t a “death blow” after all but a life-enriching experience.
“When I was first diagnosed, I was left wondering about what’s going to happen, of course…. That was a bit of a shock, boy oh boy, you know,” says Mike, aged 69.
Mike underwent brain surgery and knew little about palliative care, but has since discovered it is about tapping into personalised treatments and health care from a suite of experts to help him handle the life-limiting illness.
“When people hear the term palliative care, don’t think oh gosh, you know, that’s the end of me. It isn’t,” says Mike.
“Palliative care is not a word to dread, it’s a lifeline. And you can come out of palliative care, like I am doing now. I used to have two or three appointments a week and now I might get one a month. Hopefully, I won’t have to go at all next time. It’s a watch and wait kind of thing. Watch and wait and treat if necessary.”
He wants us all to realise that while we may fall down and struggle if facing severe illness, there’s help at hand to traverse a sometimes rocky road. People with advanced cancer can receive palliative care for days, weeks, months or years.
Palliative care offers a range of therapies to enhance life, harnessing the expertise of health professionals from a variety of fields who link up to meet the physical, practical, emotional and spiritual needs of patients. It’s an option for people with advanced cancer, which is cancer that’s unlikely to be cured.
The nature of palliative care means patients are supported in decision-making about how to handle treatment and options as to which approaches match their needs and those of their family. It’s not just about controlling pain and symptoms but encompasses holistic care that’s different for every person.
“My experience of palliative care, it has just been wonderful,” says Mike, who had depression during part of his illness.
“The people are honest and open, up-front and explain things in a way that you can understand without medical terms etc. I found them very compassionate and caring.”
The World Health Organization defines palliative care as a team approach that improves quality of life for patients and their families experiencing life-threatening illness, via treatment that targets “physical, psychosocial and spiritual” pain and other problems.
Evidence shows that specialist palliative care, which involves treatment from medical professionals with extra training in palliative care, is beneficial to cancer patients, in handling pain, managing symptoms, wellbeing and health care outcomes. In fact, studies show that the sooner people get palliative care when diagnosed with advanced cancer, the better, in terms of significant improvements in both their physical and mental health. *
Confronting news that a cancer may not necessarily be cured can be a difficult message to take on board but there is a way forward, says Professor Richard Chye, palliative care specialist at Sacred Heart Health Service, at UNSW and the University of Notre Dame Australia.
The focus of palliative care is on living well, not simply about dying, a myth that needs to be dispelled. “Palliative care doesn’t mean always dying,” says Professor Chye.
“There will always be some patients who are very, very sick, who have a very short lifespan but that is not every patient.”
Australia is progressive in its approach to palliative care, which is not only provided at the end of life but is often offered in partnership with oncologists and other medical specialists while patients are undergoing treatment. It is also available very early on, during diagnosis, while doctors are still determining the nature of the illness and options for treatment.
“Palliative care doesn’t mean that treatment stops, not at all,” says Professor Chye.
“Palliative care is about helping patients tolerate the treatments, to continue with their treatments whilst they get palliative care – pain control, nausea control, at the same time as when they get the cancer treatment.”
Palliative care will continue to be in demand in Australia as medical advances enable patients to receive treatments later in the course of the disease and to benefit from more tolerable medications with fewer side effects, says Professor Chye.
And people of all ages benefit because palliative care is delivered regardless of age: “Palliative care is there to walk along with that patient and that family and the carers and their loved ones as well.”
Palliative care also involves “supportive care”, helping patients manage any practical, emotional or spiritual difficulties that arise during treatment.
“They all have the same symptoms,” says Professor Chye. “They all have the same emotional, psychological, issues. They all have the same existential issues. What patients are going through, whether it’s a disease that is not curable, is exactly the same in patients who are also being cured as well.”
Palliative care is not just about end-of-life treatment but this type of care opens up conversations about dying, regardless of how well a person feels. The topic of dying can be confronting for patients, families and friends, as we all fear the unknown. However, knowing there is a plan in place and people’s wishes are understood can take away some of the worry about what lies ahead. A team of professionals can help patients and families explore available services and support their choices, whether they wish to receive care at home or in a hospital setting, hospice, or nursing home.
What is palliative care?
Care by health professionals who team up to enable better quality of life for people with a life-limiting illness, such as advanced cancer. The team deliver a variety of services to help patients and families navigate life with illness. There is support on a physical, practical, emotional and spiritual level that gives patients more control over decisions about treatment and the way they want to enhance life. It does not focus only on dying but it does provide specialised assistance when death is closer. Family and carers are seen as part of the palliative care team and are also offered support.
Where to start?
Palliative care can be an option for anyone diagnosed with advanced cancer. A first point of contact includes your GP or treating doctor, who can discuss ways to set up a palliative care team to help you.
Who can help?
In most cases, a GP or community nurse is likely to coordinate your palliative care, with the help of specialist doctors, nurses, occupational therapists, counsellors and psychologists, pharmacists, dietitians and holistic health care workers, as well as pastoral carers and spiritual advisers. People with complex health care needs may have their palliative care coordinated by a specialist palliative care service.
Palliative care is available in various locations, including at home, in hospitals, hospices and nursing homes, depending on individual and family needs.
What type of treatments are available?
A range of medical and allied health professionals provide holistic therapies to support people in palliative care in hospital and at home. Medical treatment includes radiotherapy and chemotherapy, surgery, medication for physical pain and medication for depression, anxiety and insomnia. Dietitians, physiotherapists and occupational therapists, offer strategies to help with issues such as poor appetite and mobility. Spiritual advisers, psychologists and social workers can help with fears and worries associated with illness and the impact on relationships, work, family and finances.