Courtesy of The Conversation | By Anna Collins | Originally Posted 11.01.2017 | Published 11.08.2017
Many people hold narrow, often inaccurate and outdated views of what palliative care is.
We may have heard it said, and in that curiously familiar tone, something along the lines of: “They’re having palliative care now.” And it’s almost as if the meaning of those words is so universally understood they need no further explanation. Most people simply assume they mean the person is now dying.
Yet, when a health professional suggests “palliative care” might be a useful addition to a patient’s care, they most likely mean something different.
So what is it the patient actually takes from the suggestion? We asked this question of people being treated for cancer in hospital, as well as their families. We wanted to explore people’s initial perceptions of palliative care when this term, or suggestion, was first raised with them in a clinical setting.
We found people held narrow, often inaccurate and outdated understandings of palliative care. Below are some of the common beliefs about palliative care, and what the science actually says.
Myth 1. It’s just nursing care
From its inception, palliative care has definitely always involved nurses. But by today’s standard there is much more to it than, for example, a nurse assisting a person with showering.
Palliative care is delivered by a multidisciplinary team of experts, such as social workers, counsellors, nurses and volunteers, who are trained to respond to the needs of people with serious illness.
For most patients, this will include consultation with a specialist palliative care doctor who has undergone additional medical training to become an expert in managing and treating the concerns that commonly arise from serious illness.
Myth 2. It’s just about pain relief
Palliative care is often called on to provide expert advice on optimal pain relief. But, just as frequently, palliative care is there to help manage symptoms other than pain that result from a serious illness or its treatment.
For example, a palliative care specialist has particular experience with medications and strategies that may help with problems such as nausea, breathlessness or constipation – which, left unattended, may reduce a person’s quality of life.
Myth 3. It’s a place to wait for death
Palliative care does provide care for those at the end of life who may prefer to receive care or have needs best attended to in hospital or at a hospice. However, it is not just about end-of-life care.
Palliative care is available at any stage of serious illness. Palliative care can be helpful and is recommended early in an illness to work alongside other medical teams to diagnose and treat the cause of symptoms, manage medications, help with communication or decision-making about treatment options, or provide family support.
Myth 4. Palliative care services are offered only in the hospital
Palliative care does provide support to people in the hospital, but just as frequently palliative care services in the community provide care to people in their own homes.
Additionally, just as a person with heart disease may go to a clinic at the hospital to see a cardiologist, people with serious illness can attend an appointment to see a palliative care specialist.
Read more: Governments must ensure palliative care is available to all who need it
Myth 5. It means depending on others for care
The principal goal of palliative care is actually the opposite of dependency. It aims to support a person to maintain their independence and quality of life while living with serious illness.
This may mean providing equipment or strategies that may be needed to ensure a person can continue to live their life to the fullest.
What does the science say?
There are now over ten high-quality, randomised clinical (human) trials, conducted internationally, that demonstrate the benefits of accessing palliative care if faced with serious illness.
Read more: Randomised control trials – what makes them the gold standard in medical research?
These studies, mostly conducted with people recently diagnosed with a serious cancer, compare the outcomes of people randomly allocated to receive either just best-practice cancer care or best-practice cancer care with palliative care.
Collectively, this science shows that people with a serious cancer who access palliative care soon after their diagnosis, alongside their recommended cancer treatments, have better outcomes.
They report feeling better, with fewer symptoms associated with their cancer and its treatment, improved mood and better quality of life. There is also growing evidence to show the people receiving palliative care live longer.
So, next time we hear a friend is receiving palliative care, we should also remember the science and think of the possibilities, accomplishments and high-quality care they may receive.
When my son was getting treated for Ewing’s Sarcoma palliative care stepped in & scared us thinking the worst that they were giving up on him. But they came in saying they were there to help sort his medications & pain relief. When a different palliative care team took over care when he was discharged home out of hospital care it wasn’t the same. He came home knowing his life was limited, that his disease was incurable so he wanted to do things like on a bucket list but the palliative care team kept saying he shouldn’t do this or that because his platelets & bloods were low. But he did them anyway living the rest of his life to the fullest. Plus he wasn’t keen on strangers coming in to wash him as the disease took away his mobility etc he preferred me (his mum) & older siblings to help out. Jacob passed away at home surrounded by 19 family and friends at the age of 20. ‘Stay golden pony boy’ x