They’re not the same – the concepts of palliative care and end-of-life care – so getting the two mixed up in your mind can mean that you miss out on beneficial support if you have a serious illness.
While the end-of-life care falls under the palliative care umbrella of course, it is only a small part of its remit. Most of the work palliative care teams do is about helping people live life as fully as possible.
“Some people unfortunately see it as relating to end-of-life care only,” says Dr Brian Creedon, a consultant palliative medicine physician in University Hospital Waterford.
The confusion creates a lot of stigma and a reticence for people to engage with the service
He is also clinical lead for the National Clinical Programme for Palliative Care.
“The confusion creates a lot of stigma and a reticence for people to engage with the service,” he says. “That’s because it is so much associated with end-of-life care, whereas the very ethos or philosophy of palliative care is about empowerment and living and enablement and improving individual quality of life.”
Introducing palliative care as soon as possible is important, and international evidence clearly demonstrates that when palliative care is introduced early with life-limiting illness, people live better and, interestingly, live longer.
“My intention, as a palliative care physician, is to assist patients to function, being sentient, feeling well and improved – not worse in terms of their quality of life,” Dr Creedon says.
Don’t miss out
Don’t let this incorrect assumption mean that you miss out on comprehensive support – that’s his key message.
“I think the assumption that palliative care is limited to end-of-life literally risks denying vital care for patients to help them live better,” he says.
He feels very strongly about people knowing this.
“While yes, living with a life-limiting illness is a huge challenge, emotionally, physically, psychologically and spiritually, we in hospital and community palliative care teams are there to help. We can’t take away some of the implicit distress of illness, but we will always work to listen, to comfort as often as we can and to relieve symptoms as well,” he says.
Very positive news
Dr Creedon says he isn’t comfortable with the term “terminal illness”.
“I think it’s a loose term,” he says. “You could argue we are all terminally ill. All of us will die at some stage. In relation to illness, there are newer treatments for cancer now and people are living with their cancer and living well. It’s similar to HIV. I grew up in a time when people in the early 80s and 90s died with HIV, but now it is exceptionally rare for someone to die in the western world from a HIV-related illness. Similarly, people with cancer nowadays are often going to live with and die with their cancer rather than die because of their cancer.”
Live until you die
Dr Creedon often uses the term “you’re living until you’re dying”.
“Until then, you are living and you don’t know when you will die, so while it’s not trying to be overly positive, it’s about affirming life and living.”
He points out that 20% of his time as a palliative medicine consultant is spent engaging with those who are dying, but 80% is spent with those who are living.
“They are living with symptoms, which I’m working to improve. They are living with disability and we are trying to find ways to help them manage and live. It’s about life enablement or empowerment – that’s our philosophy. Knowing that we can very rarely reverse the illness, but we can sometimes deal with some of the consequences, be that symptoms or pain or mobility issues or side effects.”
“There’s a whole community palliative team to help,” he says, “including GPs, public health nurses, occupational therapists and psychologists.”
Stigma – is it stopping people coming forward?
But is the confusion about the term “palliative care” putting people off seeking help early on?
“There is a stigma or natural reluctance or reticence towards it. It’s something that we want to address in our awareness week from 13-19 September. The theme of it is apt – ‘In This Together’ – and the image on our awareness week information leaflet is of an umbrella of care over the person. That’s how we see it.
“At times, when people hear the word ‘palliative’ they think it means that they are actually dying. Sometimes they have concerns about the type of drugs that will be prescribed, but in palliative care, we use drugs to make people feel better, not to sedate. It’s all about trying to help people live well and we use drugs very carefully to control symptoms.”
Patients can shy away from the palliative care team because of fear too. “It can be the existential fear of facing up to the realisation ‘OK so I’m not going to get better’. It can be tied up with accepting or not acknowledging the illness too.”
The main thing to remember is that palliative care, from the start, is person-centred.
“It’s about what the person would like to achieve, what would work for them, as opposed to treating the disease alone. Sometimes people feel ‘they are looking at my lab results and my x-rays, but nobody is asking me how I am’ so it is person-centred care that focuses on the disease, but also looks at it in the context of the person.”
Attendance at a palliative care clinic involves patients being asked questions like, “What are the problems for you today?” “Are you worried, frightened, do you have anxiety, pain, nausea?”
“That type of approach would be bedded into all aspects of health care now, not just palliative care,” Dr Creedon says.
“If issues are identified, then the palliative care team will become involved, if needed.”
How to access supportive care
If you are living with a life-limiting illness, you should raise any symptoms or concerns you have with a health professional, usually your GP initially.
“The issues may be physical, psychological or social, about managing your care at home. If the GP can’t help, you will be referred on for more specialist input. It’s good to identify problems early.”
Psychological issues can arise when someone has a life-limiting illness too.
“That may be related to previous illnesses they’ve had, so it’s good to be open and honest about those because there may be very effective treatments. This might not be medication, but could include counselling or talk therapy. Relaxation techniques can be very effective as well.
“The team may not be able to fix everything, but they may be able to direct you elsewhere to get help with difficulties that are causing you significant impact.”
Sometimes palliative care is about just being “Present” with a capital letter, Dr Creedon believes.
“Engaging with the person and really being interested in where they’re at, what they’re saying and how they are – that’s being ‘Present’.
“It’s also about allowing people to say things they might feel they can’t say to family, about advance care plans, for example. We can support them in having a voice when they may not be able to say what their wishes are for future care.”
Palliative Care Week 2020 takes place from 13-19 September.
AIIHPC director Karen Charnley says: “We’ve all seen this year how something like COVID-19 has brought out the best in people, especially in our communities, and while we can’t hold events to mark Palliative Care Week 2020 we hope we can reignite some of that community spirit to help those closest to us to get better informed about palliative care and its benefits.
“We might need to remain socially distant for some time to come but we can still feel close to our family and friends by having conversations about things like palliative care and understanding each other’s future care wishes.”
To get better informed:
To help others get a better understanding of palliative care: