When do I need palliative care?

Written by Dr Margie Venter

This article was first published in Buddies For Life

Many people grew up with the stories of Christopher Robin and Winnie the Pooh. If you don’t know them, they are well worth reading, even as an adult. Pooh and his friends often have quirky and unexpected wisdom to share.

In one such story, Winnie the Pooh goes up in a balloon, covered in mud, hoping to deceive the bees into thinking he is a rain cloud so that he can reach the honey in their hive at the top of the tree. He disturbs the bees, who start fiercely buzzing around him. Pooh then asks Christopher Robin to open his umbrella and say, “Tut-tut, it looks like rain,” hoping this will add to his disguise and fool the bees.

So, when asked the question, “When do I need palliative care?”, my answer would be, when it
looks like rain. Palliative care is your umbrella.

Following this train of thought, “rain” might be the moment when the oncologist says, “Your cancer is serious. We are able to treat and control it for a period of time. We are hoping for the best.” That is often the time to start carrying a palliative care umbrella. You might not be able to fool the bees, but the umbrella can help protect you.

There are times when physical symptoms such as pain begin to affect your daily quality of life. At other times, the emotional toll on you and your loved ones becomes significant, and it can help to share this with a professional. You might be the type of person who prefers to take things day by day, hoping for the best, but there are almost always worries about the what-ifs. Talking these through and planning ahead can help settle them, knowing that there is a plan. As Winnie the Pooh would say: “When you are a bear with very little brain, things which seemed very Thingish inside you is quite different when it gets out into the open and has other people looking at it.”

While your oncology care team can certainly help with some of these aspects, it has become more commonplace for people to have access to a palliative care team. This team works alongside your oncology team and usually consists of a doctor, a nurse, and a social worker or counsellor. Sometimes there is also a need for a dietician, occupational therapist, speech therapist, or physiotherapist, as well as the involvement of a trusted spiritual advisor or someone from your faith or spiritual community. The support is tailored to your preferences and specific needs, in much the same way that your cancer treatment is tailored to your cancer.

I am reminded of an elderly gentleman diagnosed with prostate cancer. He had received hormonal treatment for many years and was now undergoing chemotherapy. The cancer had spread to his bones, causing significant pain and making it difficult for him to manage his day-to- day tasks or go for his daily walk. He also had low-grade nausea that affected his appetite, and his wife was worried about how little he was eating. She herself was not well, and together they were concerned about what might happen if he became sicker.

We were able to adjust his pain medication, creating a plan that suited his daily routine and allowed him to sleep through the night. With a change to his nausea medication, he was once again able to eat the meals prepared with love and watched closely by his wife, for whom every mouthful mattered. They also met with the social worker and together they began working on a plan B for if and when more care might be needed. Until then, they had not known what was available or whether they could afford it. Setting this plan in motion brought great relief, not only to them but also to their children.

A week later, the hospice nurse did a home visit. She checked in on his symptoms, reinforced the medication plan, and spent time with both of them, answering questions that had surfaced since our last visit. She helped them think through practicalities, who to call when and what to watch out for.

As the rain eased, they were able to get on with treatment and everyday life. They spoke about the sense of safety that came from knowing there was a team behind them and a number they could call. They were no longer carrying this alone.

So there is no single right time to need palliative care. In my experience, many people only realise in hindsight how helpful it might have been to have this extra layer of support earlier.