Supporting children in cases of assisted dying: Guidance for social workers

Abstract

Social workers face many complex issues including the emergence of legalised assisted dying in an increasing number of countries. This article reports on factors identified as helpful or challenging to the grieving process surrounding assisted dying and makes recommendations about supporting children through the pre-death preparation and subsequent bereavement.

Introduction

As a profession involved with health and well-being across the lifespan, assisted dying, also known as euthanasia, falls within the scope of social work practice. The legislated emphasis on autonomy, choice and self-determination aligns with core values of the social work profession, creating an obligation to support those contemplating assisted dying and their families. The foundational values of the profession, that social workers respect and promote people’s rights to make their own choices and decisions, provided this does not threaten the rights and interests of others, are enshrined in the IFSW Global Statement of Ethical Principles (IFSW, 2018).

The needs of children in bereavement are often overlooked (Cockle-Hearne et al., 2022). Hanna et al. (2021) identified a lack of training on age-appropriate support and how to communicate with families about children’s grief. This article explores the gap in the empirical research on how children under the age of 18 are impacted by an assisted death and what supports would be helpful.

Assisted dying refers to legal options for a person to exercise autonomy over the way and time that they will die and has been highly contested and controversial (Hashemi et al., 2021; Philip et al., 2023). Many countries now have various forms of legalised assisted dying, and others are still debating the provisions and technicalities. Assisted dying enables cognitively competent, voluntarily consenting individuals who have a life-limiting illness, to access specifically formulated lethal substances with or without the presence of a medical practitioner, at a time of their choosing.

Assisted dying and the importance of rituals

A set date for the assisted death enables family and friends the chance to deal with unfinished business and say goodbye (Beuthin et al., 2022). Boven et al. (2023) describe the importance of setting up a ‘serene atmosphere’ to assist a dying person and their family to better manage the bereavement. Children respond to an atmosphere of calm better than one of stress and anxiety so managing the assisted death and including children in meaningful ways as part of the ritual process is beneficial. Social workers are well placed to work with the family to ensure that children are included in age-appropriate ways.

Including children in a well-prepared way could assist them with the grieving process by allowing them to be more involved in the end of their loved one’s life (Woolhouse, 2020). Currently no research explores whether children should be physically present at the time a person ingests a lethal substance, but consideration of age and maturity of the child, the circumstances surrounding the final rituals and plans for administration of the lethal substance should be considered. Social workers could prompt children’s carers to consider issues such as who will be present with the person when the lethal substance is administered and as the person dies.

For older children, a discussion about the similarities and differences between assisted dying and suicide may become necessary as part of the meaning making process associated with bereavement. Srinivasan (2019) found referring to assisted death as suicide is experienced as judgemental and negative by families. Children find it easier to accept the death of a loved one if they understand that the illness causes suffering and is terminal (Gamondi et al., 2019; Goldberg et al., 2021; Woolhouse, 2020). Messages about autonomy and choice are also important so that children can understand that dying under one’s own terms comes from a place of strength and self-determination. These concepts are difficult for children to understand unless expressed in simple terms.

Information delivery and guidance

Children should be kept informed when someone close to them is moving towards the end of life (Hanna et al., 2021). Woolhouse (2020) provides an example of how she explains assisted dying to children:

When someone has an illness that will cause their body to die, they can wait for this to happen or they can ask a doctor for help. The doctor or nurse uses a medication that stops the body from working and causes the body to die. This is done in a way that isn’t painful. (p. 3)

Children need distraction-free time to discuss their feelings and ask questions. Children’s questions should be answered honestly, with invitation for clarification of any worries, and carers can admit to not knowing answers but should commit to revisiting with further information (Goldman, 2022). Conversations with children regarding death and grief can start with discussion that people die in many ways, adding more detail about assisted dying as developmentally appropriate. Social workers who involve children in discussions about what is happening within the family will assist children to cope better through the later phases of bereavement.

Children need opportunities to openly express their reactions to dying and death, in accordance with developmental age and personality. Children may cry, become hostile or angry, or show physical symptoms such as stomach upsets and sleep disturbance (Goldman, 2022). Parents and carers should remain open to emotions associated with grief and it can be helpful for trusted adults to model talking about emotions with children, for example, ‘I may be sad for a while and cry sometimes as I feel very sad that grandma died and that I’ll never see her again’. Such examples can provide children with the words to express their own emotions and provide comfort through a shared understanding. Providing children with templates to respond to and accept the death facilitates grieving and integrates the loss (Alvis et al., 2023). Children need reassurance that overcoming grief is not about forgetting the person who died, but finding ways to deal with the pain of loss and channel thoughts and emotions into constructive avenues. Children can be encouraged to engage with creative ways of making their own situation emotionally safe and conducive to their needs for care and nurturing. Engagement with art, play and nature, which social workers can help facilitate, are all ways that children can find expressions for loss and grief. Materials developed to support families through an expected death from illness are likely to be more appropriate than those created to support families who have lost someone through suicide. Practice research will be important as social workers can observe what happens within families, questions children have about assisted death and what helps and hinders the grieving process and develop targeted resources to help children with assisted death.

Avoiding complex grief: The role of social workers and other health care professionals

It is better for children to be supported by a primary carer but complex grief can reduce the carer’s supportive capacity. Grief may be exacerbated by unsupportive systemic factors during and after the assisted dying process. People with strong religious or cultural views may believe assisted dying is immoral and oppose it vehemently (Bloomer et al., 2024; Srinivasan, 2019). In multicultural societies, there can be different levels of acceptance of assisted dying even among family members and people with similar cultural or religious beliefs (Bloomer et al., 2024). Secrecy, guilt and external judgements can result in family conflicts to which children are particularly susceptible (Gamondi et al., 2019; Goldberg et al., 2021). For issues as serious and complex as end-of-life decisions, it is important that children feel reassured that they are not the cause of family conflicts, and that nothing they have done has contributed to tensions in the family.

Social workers can seek to reduce stress on children by initiating community and workplace discussions about assisted dying. Family grief is less complicated when the culture values an individual’s autonomy and right to die and relatives are not judged or shunned (Goldberg et al., 2021; Philippkowski et al., 2021). Understanding assisted dying as an individual’s choice in reaction to intolerable suffering can build acceptance among people who oppose assisted dying (Bloomer et al., 2024). Families can benefit from professional support from trained and dedicated professionals such as social workers skilled in end-of-life and palliative care, who can visit before and after death and be available throughout the process (Johns et al., 2019). By creating accepting contexts and supporting families, social workers can help children.

Some key take-home points for assisting children who are experiencing the loss of a loved one are as follows:

• Understand age-appropriate ways of engaging children in discussions about death and the assisted dying process, including provision of information about illness and prognosis;

• Ensure that children are included in age-appropriate ways in end-of-life rituals;

• Provide clearly understandable distinctions between the concepts of assisted death and suicide;

• Acknowledge disagreement and moral discomfort around the acceptance of assisted deaths within families and communities.

Conclusion

The points made about ways to support children in the context of an assisted death are only the beginning of a longer exploration. A research agenda is needed on social work and assisted dying. Development of materials for parents/caregivers to use in explaining assisted dying to children of various developmental capacity is needed. Stigma and discrimination may continue to be issues that children and families need to navigate. As a profession, social work is well placed to lead the way in development of age-appropriate resources in this emerging field.