Often the biggest existential distress that we carry is the idea that no-one will remember us when we are gone—initially we know that our friends and family will hold who we are, but after a generation, these people are likely gone too. At the end of life, the pressure to leave an unquestionably relevant legacy can be crippling for people, particularly for young people. When coupled with the limited energy that people have when they are unwell, the very nature of what people expect to achieve in the world shrinks, and the really important pieces come into focus.

When time is seen to be limited, every moment can take on a weight that has never before been experienced. Some of these expectations come from within and some externally, but regardless of their origin they can be paralyzing for the young person facing their mortality, particularly when unwell. Culturally, there are multiple references as to 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) and notable cancer-related concepts around ‘bucket lists’ and works of fiction (e.g., The Fault in Our Stars). Most young people, particularly those who are dying, do not have the capacity or the options to engage in an extraordinary feat, they can become overwhelmed and paralyzed by what they are ‘meant to be doing’.

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

Often, as is the case with many things in life, simple and small are the gestures and moments which are the most meaningful, with huge projects and adventures feeling too overwhelming and out of the grasp of someone with limited energy and resources. As such, the fantasy of what something may have looked and felt like, had they have been well, is a much more satisfying space for them to sit with. Similarly, relationships become much more meaningful, as do the simple things that are 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

Young patients can be bombarded with well-intentioned suggestions about what they ‘need’ to do, 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 with limited resources. Patients need to be feeling very resilient and well before attempting any of these things with most being abandoned due to the confronting nature of conceptualizing the world without them present in it. It is a difficult ask for anyone to be able to take the relatively abstract idea of the world continuing following your own death; 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 conceptualize anything about what may happen in the lead-up to their death, or following. Others will organize 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. For most people in this situation, in an existential sense, almost everything is out of control, the disease will do what it does, the pain is what it is, and they are an observer to the things happening in their bodies. The things that people can control is what they talk about, how much they talk about it, and who they talk about it too.

Just because death, dying, and legacy are not being talked about, does not mean that it is not in the consciousness and thoughts of the person pondering their own end. 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 the decisions that must be made about their care.

References

Chochinov, H., Kristjanson, L., Breitbart. W., et al. (2011). Effect of Dignity Therapy on Distress and End-of-Life Experience in Terminally Ill Patients: A Randomised Controlled Trial. The lancet oncology. 12. 753-62. DOI:10.1016/S1470-2045(11)70153-X

Hack, T., Mcclement, S., & Chochinov, H., et al. (2010). Learning from dying patients during their final days: Life reflections gleaned from dignity therapy. Palliative medicine. 24. 715-23. DOI:10.1177/0269216310373164

Hedkte, L., (2014). Creating stories of hope: A narrative approach to illness, death and grief. Australian New Zealand Journal of Family Therapy. 35. 4-19. DOI:10.1002/anzf.1040

Kehl, K., (2006). Moving Toward Peace: An Analysis of the Concept of a Good Death.. American Journal of Hospice and Palliative Medicine. 23. 277-286. DOI:10.1177/1049909106290380

Smith, R. (2000). A good death: an important aim for health services and for us all. BMJ. 2000;320:129-130.

Steinhauser, K. E., Clipp, E. C., McNeilly, M., et al. (2000). In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132:825-832

Steinhauser, K. E., Alexander, S. C., Bycock, I., et al. (2008). Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial. Journal of Palliative Medicine. 11. 1234 – 1240. DOI:10.1089/jpm.2008.0078