“We might ask if their will is done, have they done a power of attorney, do their partner, children or parents understand where they’re at in the disease process and if they have questions about how they are.”
“It’s a gradual thing and we try to be gentle.”
How to have one of the most difficult cancer conversations
Embracing end-of-life care and how loved ones can help
The treatment of any potentially deadly condition carries with it for most people an element of hope – that the treatment will be a success, they’ll regain their good health and that they’ll live for many more years.
Sadly, of course, for some, that’s not the outcome. Instead, they and their family must deal with a barrage of emotions as the patient makes the difficult transition from active treatment to palliative care.
Dr Ralph McConaghy is a palliative care specialist who helps patients and their loved ones navigate this journey, says the end of active treatment is a devastating moment for most people who are fighting cancer.
“They have a conversation with the oncologist, who says there’s no more treatment we can offer you to fix this cancer, so it’s going to progress and it will end your life,” he says. “Quite often the patient feels like ‘you’ve put me in a row boat, untied me from the jetty, pushed me into the ocean and I’m sailing away by myself’.”
Dr McConaghy works to ensure that that’s not the experience of Icon’s patients, where there’s a gentle transition and ideally overlap between oncological and palliative care.
Icon specialises in providing cancer treatments, including chemotherapy, radiation therapy and hormone treatments that can be used to cure the cancer. If this isn’t possible, then such treatments may prolong life or possibly minimise symptoms in patients with terminal conditions.
Embracing end-of-life care
Dr McConaghy doesn’t deny, though, that a patient’s first appointment with him can be scary.
“I usually say to people, ‘You’re probably anxious that you’ve met me’ because likely the only thing they know about palliative care is that they might meet a doctor like me only in the last one or two weeks of their life,” he acknowledges.
But palliative care is about so much more than managing pain at life’s end, he says.
“My job here is to help you live as well as you can until the end of your life,” Dr McConaghy says he tells patients in his care. “I can’t tell you when that’s going to be, but in the meantime, how can I help you achieve your goals, live as well as you can, support you and your family so that life is as good as it can be?”
This can involve ensuring the patient and their family have access to the array of support services available, including local care providers, support groups and non-profit organisations such as the Leukaemia Foundation and Cancer Council.
As well, there’s a free service provided by the government called PalAssist that provides 24/7 phone and online support to people with life-limiting illnesses and their families, and Dr McConaghy also recommends CareSearch, an online resource centre for people exploring end-of-life issues.
In addition to providing emotional support and information, palliative care is about managing any physical impact from the patient’s condition.
“I’ll just say to them, ‘I’m good at helping people with pain and other symptoms, so why don’t we talk about what’s causing your distress and let’s see if it can be improved it’ and usually it can,” Dr McConaghy explains. “I’ll meet them again two weeks later and they’ll say, ‘I feel much less pain, why didn’t I see you six months ago?’ and that’s a common comment.
“We’ll build a relationship and talk about the scary stuff as time goes by.”
Some of that ‘scary stuff’ involves helping patients ready themselves for the end-of-life journey at a time when they’re mentally prepared to have that conversation.
How loved ones can help
He says families and friends can make this transition as easy as possible for the patient by confronting “the elephant in the room” that is their approaching end-of-life.
“Our job is to help patients and families reach their goals,” Dr McConaghy explains. “The more we have conversations, the more we work with them, the better the outcomes are going to be for all involved.”
“I make plenty of time in the consultation for the family members to actually raise their concerns and their worries and to ask questions that are troubling them. I encourage that discussion in front of the patient, so there’s no secrets, there’s no unspoken words, everyone is on the same page.”
He encourages loved ones to wear their hearts on their sleeves in ways the patient finds comfortable.
“Families certainly think they’ve got to be brave and not to stress the patient by showing their feelings,” Dr McConaghy says. “The important things is to talk about how much they love each other, talk about how sad and difficult it is and give the person permission to cry.”
“Hop in bed with the patient and have a hug. Do the things that feel important and valuable for each other.”
“That works well for some families who are pretty touchy-feely, but if you’re a bunch of blokes, you may approach it differently, have a beer and say, ‘how are you going mate?’ but still cover the same important topic.”
Dr McConaghy says that palliative care specialists can advise families how to care for their loved one at home, from the food and exercise they may be able to take to the emergency numbers to call should the patient’s condition suddenly worsen.
“Often they’ll want to know about what if the person they love wants to die at home,” he says. “What would it be like, if it’s scary or awful, how they do it, who would help them, what happens after they die? The truth is, when a person dies the family don’t have to do anything immediately. I’ll say, ‘get the grandkids over, let them hop in and cuddle up with their granddad – he’s died, but he’s not scary’.
“Sometimes that’s a really precious and important time for people, just because they get to say goodbye properly.”
While the mention of palliative care is no doubt frightening for a person battling cancer, studies show that early involvement can actually lengthen patients’ lives, further underlining the importance of palliative care in the management of cancer patients, with the American Society of Clinical Oncologists and the European Society of Medical Oncologists both advising that patients become involved with palliative carers as soon as the cancer spreads.
Icon Medical Director Dr Ian Irving explains the company’s dedication to patient care throughout their cancer journey.
“Icon recognises the need to introduce palliative care options to patients early, so they are supported throughout end-of-life care,” Dr Irving says. “Icon refers patients to specialists like Dr McConaghy across the nation and connects them with local support groups and allied health to ensure they are looked after beyond their treatment.”
Dr McConaghy adds that “that involvement may happen many years before death, because it’s recognised that early engagement improves quality of life and quite possibly length of life”.
“We don’t need to be something people are scared of, we really want to further the quality of life you can experience.”
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