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End of Life Support for AYAs with Cancer

AYAHow can we respectfully make our child feel independent even when he or she becomes dependent?

Dr Anne Grinyer, Faculty of Health and Medicine, Lancaster University UK

NOTE:  AYA = Adolescent/Young Adult

When parents care for an adolescent or young adult (AYA) son or daughter with cancer, the struggle that the AYA has in retaining their fragile independence throughout the treatment period can cause tensions within the family. If treatment fails and the AYA faces the end of life, the situation can become even more challenging for both the parents and the AYA whose failing health will necessitate increasing reliance on parental support. Yet despite deteriorating health, the AYA may attempt to assert their independence in order to live the remainder of their lives to the full – often causing parents acute anxiety in the process. How can this situation be managed?

Throughout my research, the accounts I have been given by parents speak of the lengths to which they have gone to support their sons and daughters in achieving as much independence as possible; in many cases, in spite of experiencing acute anxiety about their welfare. The dying wishes of 18 year old Simon who had never before left his own country and wanted to see London before he died, were to travel from his home in Australia to England with his two friends from University. For his parents to enable him to do this, knowing they might never see him again, is an unimaginably courageous and selfless act of love. Most parents are not tested so acutely, the scenarios they are required to manage may be of a more routine – but still challenging – kind. For example; Sianne whose mother Candy enabled her to go on holiday towards the end of her life despite the anxiety it caused her; Miles whose illness prevented him from leaving his bedroom, was supported by his parents despite their concern at the amount of money he was spending on phone calls and purchases from the internet. They decided to worry about the financial costs ‘later’ and recognised this was the only way he could retain any autonomy and maintain social connections; Matthew insisted on driving himself to hospital appointments despite his ill-health, his mother Iris ensured he was always accompanied but enabled him to retain the ‘independence’ that driving himself denoted.

 

In all the examples above the threat to the AYA’s independence was coupled with their need to retain or regain as much independence as possible before the end of life. However, Alex’s mother Sue points out the volatility of the situation:

 

Nor was the situation clear-cut. Sometimes Alex was back to being the child again, expecting us to sort out all the unpopular difficulties such as insurance and registrations, or clamouring for an ice-cream, wanting a cuddle and a kiss and generally basking in family love. But at other times – in keeping with his age and circumstances – he was the young adult who could manage perfectly well without interfering parents, thank you very much! We also kept forgetting which role we were playing or supposed to play…A muddle. Realising that the crux of the problem must be his loss of independence, his privacy, and his dreams, quite apart from the physical and mental torment he was going through, plus the fact that it was imperative for him at his stage of life to feel that he was still the boss, we tried to manage by humouring him and letting him lash out at us. But enough is enough. Eventually I lost patience, and we simply had to battle it out.

(Sue quoted in Grinyer 2002 p. 26-27)

 

The examples I have given are age and life stage related – a younger child would not be able to make the bids for independence attempted by the AYAs, an older person might not feel the urgency to achieve unfulfilled dreams and aspirations. It is a delicate balance for parents to enable their son or daughter to experience the freedom and independence so precious to them at the end of a young life, while simultaneously being there to catch them when they fall. This is not an easy path to tread; as Sue said, while Alex might sometimes be very dependent, he could also lash out and she might lose her patience. Perhaps it is important for parents in such circumstances to know that it is not a personal ‘failure’ on their part if there is conflict. The stress under which the whole family is living, coupled with the sometimes opposing priorities held by the young person and their parents, will almost inevitably result in tensions at critical moments of the end of life trajectory.

The reflections of the parents I have spoken to after their son or daughter has died suggest that they are likely to have fewer regrets if they have managed to allow their son or daughter to take some degree of risk – to enjoy the holiday, football match, festival or party – but know that home and family are there for them when they are ill or frightened.  If parents can resist the temptation, to say ‘I told you so’ or overprotect them when their son or daughter returns in distress or worsened health and instead offer unconditional support until the next time they need to fly the nest; this is likely to make for a more harmonious family dynamic during this most demanding and stressful time.

 

Source material: Grinyer, A. (2002) Cancer in young adults: through parents’ eyes, Buckingham, Open University Press

 


 

 

annegrinyerDr 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. 

 

 

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