By Natasha Michael
A single death can transform a life, particularly when a child loses a parent. It is estimated that every year in Australia, 10,000 parents are diagnosed with cancer, affecting 21,000 adolescents and young adults aged 12-24 years.
These figures do not capture the many young people who experience parental loss through sudden deaths, suicide, chronic illness or accidents.
Palliative care services can play a significant role preparing parents and children for what lies ahead. But parents should remain the primary provider of information and support to a child, with the practitioner providing guidance and direction.
Children whose parents have a serious illness experience many anxieties, the greatest of which is that their parent will die. These anxieties may be internalised, affecting mental, emotional and cognitive functioning, or externalised through aggression, self-harm and disruptive behaviour in school or home.
Early parental-child preparation can do much to alleviate anguish and trauma.
Preparation requires the consideration of chronological and developmental age, prior family functioning, cohesion and communication styles, sociocultural expectations within the family unit and, critically, the timing of what and how much information to provide.
Older children understandably experiencing greater disruption, with adolescent and young adult offspring in particular experiencing higher levels of anxiety and depression, as household and caregiver responsibilities intrude on their leisure activities, and impair their academic achievement and normative development.
For younger children, stories written specifically to introduce the concept of loss, death and an afterlife are used, and allow for the involvement of grandparents and extended family.
Conversely, adolescent preparation requires a more sophisticated understanding of specific coping strategies, with friends and schools vital in providing a sense of normality about life.
An adolescent may take a problem-focused coping approach by asking questions, reading about the illness, and assuming responsibility for household chores/sibling care; an avoidance and emotion-focused coping approach by refusing to think or talk about the illness; or a dual approach.
Many children do not articulate internal worries, such as “who will care for me?”, “did I cause my parent to die?”, or “will I get sick like mum or dad?”. Skilled practitioners highlight these potential anxieties to parents, encouraging dialogue and the possible referral to clinicians who will work specifically with children.
Critically, for children, updating schools confidentially about progression, ensuring pastoral support and identifying a parent “substitute” at an early stage, to attend key school events with a child (with their consent), may ease transitions.
Single parents merit specific attention, as they face the additional difficulties of guardianship and ongoing care. Likewise, children with unique physical, psychological or intellectual needs require specific interventions to ensure their grief does not became disenfranchised or their fears invisible to others.
For a parent facing death, “legacy work” may provide an opportunity for memory making. Legacy work is the process of transforming thoughts into action, with a shift over time from financial and practical matters to the existential.
Creative arts and pastoral practitioners assist with the purposefully creation of keepsakes such as scrapbooks, hand prints of parents and their children made in plaster, video montages, or cards written or gifts purchased for a future birthday or special occasion.
Legacy work presents a challenge, as it involves baring one’s raw emotion. Support from a good practitioner allows much to be accomplished, enabling a parent to link their past, present and absent future into a compelling whole.
A frequent issue that requires clarification is if children, particularly young ones, should visit a parent after death or attend a funeral. The decision is a very personal one for a child.
The child or young person must be given the choice, which is an informed choice of understanding what viewing the body will mean. The normalisation of this phase of death may enable some closure, and if children have clarity, they often can manage this well.
Great sensitivity is required in the preparation of the child and the laying out of the deceased parent. Children benefit from an explanation that their parent may look or feel different, may be pale or feel cold to touch, or that their eyes may be closed but they are not asleep.
Many children benefit from placing a card or flower on the body of their parent, a task allowing a comfortable proximity that may lead to a gentle brush of the hand or kiss on the cheek. Some may simply stand at the door or even change their mind.
Reassurance is needed that there is no right or wrong way to do this, and that not viewing the body does not mean they didn’t love their parent. This is particularly important when there are siblings who may choose different approaches.
My dealings with parents have been inevitably linked with the experience of the sudden death of my father in my early 20s. We were wholly unprepared for the loss of his presence as we achieved our subsequent adult milestones of graduations, marriages, career progressions, the arrival of children and significant life events.
Twenty years passed before I spoke candidly to my youngest sibling, then a tender 16-year-old, left alone as we all lived abroad, of the impact of our father’s protracted illness and loss on her life. Sharing our stories enabled a healing experience, continuity of a parental legacy and connection into the future.
This week Australians celebrate National Palliative Care week, which has the theme Palliative Care It’s more than you think. We celebrate the courage of many parents who have faced or are facing a serious illness, and their children.
Palliative care, when done well, can alleviate much suffering through early preparation and journeying with families as they navigate this most difficult of life experiences.
Natasha Michael is Director of Palliative Medicine Cabrini Health and is also Associate Professor at the University of Notre Dame and Monash University