Through four phases of research on the psychosocial impact of cancer in adolescents and young adults, I have looked at the effect on the family, the experience of treatment and the care setting, survivorship and finally palliative and end of life care. All my observations throughout the process suggest that this age group – from 16-24 – are particularly shocked by a cancer diagnosis, they do not fit well in either paediatric or adult care settings, and they struggle with the loss of their burgeoning independence. However, when treatment fails and there is a terminal diagnosis, all of these age-related issues are exacerbated for the young people, their families and their health care professionals. While most of my research is UK based, these are challenges that transcend national boundaries and are situated in the life stage of the young people.
Young people in this age group have immense difficulty in accepting that they will not survive their illness; phrases from my interviews such as ‘it’s not gonna happen…I know how strong I am’; ‘don’t worry mum. I’ll be alright’; and from a professional ‘they cannot believe their life’s coming to an end’, demonstrate the strong sense of invincibility so characteristic of the young people, making it difficult for parents and professionals to talk about their impending death and to prepare them and their family for what is to come. However, a different challenge arises when parents, understandably wishing to protect their son or daughter from the truth for as long as possible, attempt to persuade the health professionals not to divulge how serious their condition is. I have encountered situations in which this has caused tension at the bedside with parents trying to stop the doctor from revealing the hopelessness of the outlook and worrying that a well meaning member of the care team will ‘let slip’ the prognosis when the parents are absent; as one mother of a 20 year old said ‘why did he need to know?’. Yet even when the young person has accepted that they will die, tensions can arise as they may not agree to palliative treatment to prolong their lives – for them the priority may be how they live their lives – for their parents it may be how long they live their lives. Conflict and acute anxiety can result if what is perceived as futile treatment is refused and the young person attempts to assert their independence by living the remainder of their life to the full – sometimes in ways that may hasten their death. The parents of one young man, Simon aged 19, had to accept his decision to travel from his home in Australia to visit London where he died. He had never travelled before and this was his only chance.
These complicated age-related scenarios may take place in care settings where the challenges posed by this age group are not well understood and where the young people do not ‘belong’ feeling out of place in a paediatric environment with young children and ill at ease in an adult environment alongside much older people. Even if age appropriate care is available, the young people may want to die at home to be with their families and near to their friends. Yet, if they return to the parental home – often the most likely outcome – age appropriate home-based support may be difficult to find; as one mother from the USA reported, the service was unreliable and did not take into account that this would be the death of a young man who had no intention of dying. Family relationships may also need to be reconfigured; if the young person has a partner, delicate negotiations may be necessary so that parents do not feel displaced but the partner’s role is honoured – again a trigger point for tension under such distressing circumstances.
Having talked to many bereaved parents it is clear that the way in which the final months, weeks, days and hours of their son or daughter’s life is lived, can shape the grieving process. Anger at services being inadequate, not appropriate for their age and life stage or even unavailable, continues to cause anguish. Parents may feel isolated and abandoned by the health care professionals they had come to rely on and who they feel have simply ‘moved on to the next patient’ – as one mother said; ‘I felt completely and utterly dumped…it’s like we never existed’.
The preceding paragraphs paint a bleak picture – so what might be done to alleviate some of the age-related difficulties for the young people, their families and their health care professionals? No blueprint for care will address the differing family relationships and scenarios or the disparity in the maturity of young people in this age group – not always related in any simple, linear way to chronological age. So, at an early stage, individual family dynamics need to be assessed by professionals and ground rules agreed in consultation with the young person and their family about how information will be shared – some young people may not want the responsibility of decision making and may wish information to be filtered through their parents, others will want the information first which can then be shared with families. In an open awareness context, the young person’s wishes for how they live the remainder of their lives and manage their deaths can be negotiated – perhaps with the input of a specialist bereavement counsellor rather than relying on medical personnel. This will not necessarily resolve the struggle for autonomy for the young person nor the urge parents may feel to intervene in order to protect what they believe to be their son or daughter’s best interests. Nevertheless, in a heartbreaking situation, if these potential struggles and conflicts can be managed with skilled support, the young person may be able to come closer to achieving a ‘good death’.
Dr Anne Grinyer is a medical sociologist and Senior Lecturer in the Faculty of Health and Medicine at Lancaster University, UK. Her research over the last 12 years, supported by the George Easton Memorial Trust, has focused on the effect of life stage in adolescents and young adults (AYAs) with cancer, and covers four main phases. The first phase focused on the impact a cancer diagnosis at this age has on family dynamics particularly in terms of the life stage of the AYAs. The second phase was based on interviews with young adults with cancer in order to understand the life stage issues from their perspective with a particular focus on the setting of care. The third phase examined long term survivorship and the ongoing impact of life stage at diagnosis. The fourth phase addressed palliative and end of life care for the age group and the challenge of providing age appropriate care. Each phase of the research has resulted in a number of publications including books based on the qualitative data collected from participants. The books are:
Grinyer, A. (2002) Cancer in Young Adults: Through Parents’ Eyes, Buckingham, Open University Press.
Grinyer A. (2007) Young People Living with Cancer: Implications for Policy and Practice, Buckingham, Open University Press.
Grinyer, A. (2009) Life after Cancer In Adolescence and Young Adulthood: Late Effects and Long Term Survivorship, Oxford, Routledge.
Grinyer A. (2012) Palliative & End of Life Care for Children & Young People: home, hospice and hospital, Oxford, Wiley Blackwell.
Anne also has an interest in the ethics of health research and in research design and has published a number of papers on this topic.