Blog Post

Cancer is always a scary diagnosis, and in some cases, though not most, death is an outcome that must be faced. So what exactly do we say to young people who are struck by an illness which may remove a life barely begun? Toni Lindsay is a clinical and health psychologist who works with adolescents and young adults with cancer and author of Cancer, Sex, Drugs and Death. Here she talks about how the young in her care feel about dying and the impacts on those around them, including their therapist.

‘I think I have well and truly missed my opportunity for greatness, I now just want enough energy to spend time with my friends. Maybe even go to the pub.’

— 18-year-old male

One of the things that young people will often speak about at the end of life is an incredible expectation on them to be able to leave a legacy and make their time important. Some of these expectations come from their own concerns and some reflect the influences of the culture that surrounds them via family, friends, interests and societal norms. Regardless of their origin they can be paralysing for the young person facing their mortality, particularly when unwell.

Culturally, there are multiple references around what ‘dying young’ is meant to mean and most refer to extraordinary and often unobtainable expectations. For instance, members of the ‘27 club’ (celebrities who die on or before their 27th birthday), notable young cancer sufferers who gain worldwide attention though social media, the concepts around ‘bucket lists’, and works of fiction (for example, The Fault in Our Stars). Most young people though, particularly those who are dying, do not have the capacity or options to engage in extraordinary feats. In fact, they can become overwhelmed and paralysed by what they are ‘meant to be doing’.

Some of what young people feel they ‘should’ be able to do with the time that they have left can be relevant and helpful — for instance, a young person’s friends buying them tickets to a show they have always wanted to attend. These things can be simple, yet incredibly significant. For some young people though, the activities they want to do may not be achievable with the level of illness they are experiencing. They will feel that that the experience will not be the same as it would be without the medical restrictions on mobility, or prolonged bouts of nausea and lethargy for example. In these cases though, the fantasy of what that experience might have looked and felt like, had they have been well, is a much more satisfying space for them to sit with. Likewise, the ‘ordinary’ experiences that come from a valuable relationship become much more meaningful, as do the simple things that may be taken away through the treatment process, like being able to sit in the sun, or go to the pub with a friend.

‘I had been playing online games with him for years, and I thought that I would never meet him now. He made it happen though.’

—19-year-old male

Less-helpful suggestions of what the dying young ‘should’ be doing are often those driven by other people. For instance, a 23-year-old woman being encouraged to return to a third world country to be closer to her family, but who wanted to remain in Australia with her care team. Young patients can be bombarded with such well-intentioned suggestions, including making future legacy-based activities, such as leaving cards for each of their younger sibling’s birthdays, video journals of their death, or chronicling how they feel about all the people in their world. Although, these are good ideas, they are emotionally and physically difficult to manage for a healthy person, let alone for those already dealing with the physical and psychological distress of a cancer. Patients need to be feeling resilient and well before attempting any of these things. If they are not, they are likely to be abandoned.

It is a confronting task for anyone to take the relatively abstract idea of conceptualising the world without them present in it. This does not change for young people and, in some ways, it is even more challenging due to their pervasive sense of self, even in the face of very real threats to their mortality.

‘I could clean out my room, and all of my stuff. But then I think, well I don’t want to do it really, and it’s not like it’s going to be my problem.’ — 23-year-old male

The way that young people respond to being presented with a very limited life expectancy can vary tremendously. Some may stick their head firmly in the sand and refuse to discuss or conceptualise anything about what may happen in the lead-up to their death, or following. Others will organise everything about the end of their lives, including where they want to die, how alert they want to be, as well as what will happen following their death — such as where their belongings go and how they want to be remembered. It is important to note that even if they have decided to not actively engage in discussions about this does not mean that they are in denial or not accepting their prognosis. Instead, it may be that they have done as much thinking and talking about it as they need to do; it is often these patients that have very well-considered plans about what they want to happen as they deteriorate and decisions must be made about their care.

As the therapist working with young people at this stage of their lives, the work that can be done is pivotal, but it often very confronting. Discussion of the practicalities of a young person’s end of life and what they leave behind can provoke very strong emotions, not only for the patient but also for the therapist. Generally, these conversations will lead to reflection on the therapist’s own beliefs about where they are in relation to the patient’s wishes, which may elicit strong positive and negative emotions.

There is often significant anxiety within support teams and families for young people to have an acceptance of their death, which can lead to pressure on the therapist to make the young person talk and ultimately resolve any unresolved issues prior to their death. Yet there will always be things left unresolved. That is the nature of human beings.

Young people need to be the drivers of any discussions about time at their end of life and the meaning that they wish to make about it. Some will speak about this in every session for the time that they have left, whereas others will only ever speak about it once, and feel that they have said all that needs to be said. It is not the job of the therapist to ‘uncover’ something. Sometimes things are just as they are and a young person will die without ever confronting or managing things that perhaps those around them think they should.

‘I have the list of things that I need to give to people. I know exactly where everything is going. Except, whenever I try and give the stuff to them, and say goodbye, they tell me to stop it, and tell me that I need to think positive. Like somehow by communicating about me dying might make it actually happen.’

—– 22-year-old female

The inverse of those who believe that young people should spend a lot of time talking about their death are those who instead believe that it should not be talked about at all. Instead, young people may be faced by a barrier of sentiments such as ‘don’t talk like that, it will be ok’ and ‘you just need to be positive, doctors are often wrong’. Young people will frequently refer to the frustration that comes from being ‘shutdown’ from talking about what they are really worried and thinking about.

Particularly pervasive within the common vernacular is the sense that positivity is the answer to the cancer problem. This occurs throughout the time of the young person’s cancer, often appearing at the diagnosis, whenever they acknowledge that the treatment is difficult, around periods of relapse and around the end of life. If asked about it, the people speaking about these things can often identify that it may not be helpful, but it provides a buffer from having to address the real concerns that are difficult, uncomfortable and challenging to sit with. Young people are well-versed in sitting with this discomfort, but will generally acknowledge that they make concessions about how they communicate with others about their feelings, and how they are coping to protect them from what they are experiencing. Some, however, can become overwhelmed with the reluctance of those around them to be ‘real’ about their pending death and sense of urgency, even if they know that the person they are frustrated with knows what is happening.