Technology allows children in palliative care to escape from the hospital room for a while

Communication represents a crucial part of paediatric palliative care, as you talk not only with children - patients - but also with their parents. Which conversations do you consider the most challenging?

Communication is the core of our work, alongside the medical aspect. Conversations with parents and young people of various ages each come with certain challenges, that is clear. But I would say that probably the most difficult is talking to children very openly about the future and the fact that their life might indeed be shortened and they might be dying. That is really tough.

What language do you use to communicate with child patients?

We do not use euphemisms or terms that distort the meaning of what is happening. We speak to children clearly and understandably, so we use words like 'deaf' or 'dying'. We do not want them to have misconceptions about what the reality is.

When is the right time to include a patient in palliative care?

I think there is generally a great fear when the words 'palliative care' are mentioned or when it is accepted by families because we are perceived as a symbol of death and dying. However, by integrating palliative care much earlier, when no one is yet talking about death and dying, when we are still largely focused on treatment or prolonging life, we can relieve patients of fear and build a relationship with them.

What is the availability of this care in Canada?

Children's palliative care in Canada has developed quite rapidly over the last 10 to 15 years. Previously, teams providing this care existed only in a few major centres across the country, but now they are in all major children's hospitals, which I think is an incredible development.

And how do you see the future in this regard? What could we expect in five or ten years?

I hope that we will see earlier involvement and a broader scope of this care for children with serious illnesses and their families. I think we are heading in that direction. I have been doing this work for many years, and each year I see a greater level of integration of palliative care. There is much evidence that it has enormous significance even in the early stages of the disease. Many teams do not use the term 'palliative care' at all, but come up with creative names. My team is called PAC, which stands for Pediatric Advanced Care team. This acronym is also used by many other teams in North America.

Are new technologies part of palliative care?

Technology, of course, changes everything we do in life. And it changes all aspects of healthcare, which I think will also apply to children's palliative medicine. As I said, communication plays an extremely important role in our work. I think this is something that can be very well done through telemedicine or video calls. Many families really appreciate it. The conversations we have with them about their children's health are often emotionally very demanding. These families are much more comfortable joining from the comfort of their own home, where they can more easily be themselves, for example, expressing sadness. It often saves them the need to pack up and go to the hospital to meet someone and have a very difficult conversation, which they might not even want to participate in.

How does virtual reality help you?

With virtual reality, we can take a child out of the hospital for 15 minutes a day. Some children have 'visited' their homes in this way. Using virtual reality software, we recorded a visit to their home, so they could walk through their home, return to their room. Most young patients want to get to more interesting places. So we sent them to Disney World via virtual reality, including the flight. We had a child who went into space from their hospital room, and other children dived into the depths.

Do you also use virtual reality to strengthen social relationships?

Once a month, we hold a virtual forum where teenagers with serious illnesses can meet. In reality, they are spread out across the province of Ontario, but thanks to virtual reality glasses, which they put on, they meet in a conference room for an hour and can talk about anything they want. They usually do it without prompting.

In this space, they can become whoever they want, and set their avatar to look how they want. It is another way that I believe will change the future and hopefully improve the way we provide palliative care to children and their families. It will also increase the level of support we can give them.

Alexandra Izraelová
Editorial Team, Medscope.pro