When a patient is dying, it can be difficult to communicate with patients and families about prognosis and treatment. For example, when transitioning from providing treatment-to-cure to end-of-life care, communication around anticipated death can feel stressful or anxiety-provoking for healthcare providers. Healthcare providers and families may also have differing opinions regarding treatment goals and may not share the same values. Our own emotions and experiences can even impact our ability to reflect on the needs of a patient and their family. We know that end-of-life care can have an impact on how families cope when a patient dies. See below for guidance on working with families throughout end-of-life care.
Pediatric end-of-life care is inherently challenging
When a child is dying, it's normal to have a range of emotions. It may feel as though the "natural order of things" has been disrupted, or it may feel as though we have not achieved our original treatment goals. It's no wonder that it can be difficult to communicate during pediatric end-of-life care. Importantly, though, research and clinical experience with families indicate that candid, compassionate communication is important to end-of-life care, especially in pediatrics. Here are some tips for working with children during end-of-life care.
Involve the child
When developmentally appropriate, children benefit from being informed and involved during the end-of-life process and early in treatment when possible. However, it is always important to respect caregiver values around the level of child involvement.
Identify key support providers early
When giving a difficult diagnosis or prognosis, it can be helpful to have someone present who has good rapport with the child and family, and who has been involved regularly in their care. Consider collaborating with palliative care early in a child's treatment.
Engage the child in advanced care planning
Resources such as My Wishes (children) or Voicing My Choices (teens and young adults) can be useful tools to engage in advanced care planning with pediatric patients. Involvement in decision-making can be empowering when age appropriate.
Consider the child's viewpoint
Examples of what a child might be thinking or feeling:
Fear, Anxiety, Sadness
What is going to happen to me?
Can I cope?
Can my family cope?
What is the dying process like?
Will it hurt?
Creating legacy projects can be meaningful for some children and their families during end-of-life care. Children may be comforted by making things that their loved ones can see and hold after they have died.
Communicating with children at end-of-life
Questions to reflect on
What does a child want to know?
What does a child need to know?
What can a child understand?
What is the child’s viewpoint?
Be clear and developmentally appropriate
Is this something you’ve talked to mom/dad about?
That’s an interesting question–what do you think?
May I ask what made you want to ask me that?
What would be most helpful for you to know right now?
Honesty is best
Be patient with yourself and when in doubt be honest in a way that is not harsh. It is okay if you don't know the answer. Sometimes saying "I don’t know" is the most honest and truthful you can be when a child asks a very difficult question.
Supporting families when a child is at end-of-life
When a child is going to die, their family needs thoughtful care, too
Parents and caregivers of dying children are essential to a child’s end-of-life experience. Care received during end-of-life treatment contributes to how caregivers and family members cope when a child dies. Here are some tips to help navigate your work with families when a child is at end-of-life.
Caregivers should be informed of what to expect during the dying process and what medical care will be provided.
Address symptoms. Both caregivers and healthcare providers rate pain as the symptom that is most distressing to witness and treat in children.
Use clear language and avoid euphemisms. For example, use words like death, cancer, dying, dead, stopped working rather than terms like lost or passed away.
Affirm and reassure that parents are doing everything that they can to support their child at end-of-life.
Revisit information. Stress surrounding diagnosis of a serious medical condition is associated with poor retention of information by patients and families. It's important to check in regularly.
Caregivers may struggle with the loss of their role as protector. The caregiver-child relationship can be facilitated by active and continuous caregiver involvement in patient care.
Involve caregivers in decision-making when possible. For example, identify the preferred location of death (e.g., home, hospice) and be considerate of logistics.
Incorporate caregivers’ support network(s) during the end-of-life process since the relationship with the medical team often ends fairly abruptly when a child dies.
Identify ways to engage caregivers in their child’s care. Invite caregivers to help their child create a warm environment when receiving treatment away from home.
Support spiritual or cultural rituals.
Reflect on differences between caregivers' and clinicians' understanding of a child’s prognosis: Might they be confused or uncertain about the treatment plan? Am I communicating clearly?
Lack of caregiver readiness to have the discussion: It can be difficult for parents to transition from treatment-to-cure to treatment-to-comfort. Are there additional supporters that can answer questions and aid in this transition?
Consider whether caregivers are receiving adequate support: It may be helpful to encourage respite for primary caregivers.