Asking and answering the hard questions
We hear why honest communication is a cornerstone of good children’s palliative care.
Good communication from all channels
Communication is the cornerstone of all interaction and ensures relationship. However, poor communication can lead to misunderstandings, anxiety, resentment and, inevitably, a complete breakdown of trust.
Good communication practices in palliative care are crucial. Particularly when caring for very sick children and their families. This includes communication between the palliative care team members themselves; conversations with parents; communication between parents; and, most significantly, direct communication with the sick child.
A conspiracy of silence
Children are among the most marginalised and vulnerable members of society and, in many instances, are not consulted on decisions that affect them directly. This becomes even more prevalent when a child has a serious, life-threatening or life-limiting illness.
A ‘conspiracy of silence’ often begins at the point of a life-threatening or life-limiting diagnosis. Understandably, parents feel a strong urge to protect their child from the difficult reality of a poor prognosis. Reasons for this include: not wanting their child to be burdened with thoughts of the possibility or certainty of their death; discussing death may be contrary to their religious or cultural belief systems. They may believe that talking about the possibility of death means giving up, or that their faith is not strong enough, or it may just be too difficult. Parents will often insist that the medical team also keep the truth from the child, drawing them into the conspiracy.
The sick child often, unwillingly, becomes a co-conspirator to this silence in a courageous and selfless effort to comfort and protect their parents and loved ones. Research has revealed that most children who are dying are aware of it but quickly realise that certain topics are upsetting to their loved ones, so they avoid them. They may resist asking questions or raising distressing concerns. A child with advanced cancer told her doctor: “I feel like I can’t talk to my parents about it because it upsets them more. This is already so hard for them, I don’t want to make it harder.” This breakdown in honest communication usually creates even greater suffering for everyone, particularly the child.
Palliative care included from diagnosis
Children’s palliative care offers total care of a child and family. Ideally, it’s introduced at the time of diagnosis of a life-threatening illness, such as cancer.
It can and should be provided at the same time as curative treatments, like chemotherapy and radiation, and can be withdrawn if no longer needed, or increased when necessary. Palliative care includes providing specialised care at the time of death and offering appropriate support for the family as they grieve. The overarching goal of children’s palliative care is to reduce suffering as much as possible, leading to an improved quality of life and dignity in death.
The inherent paradox in palliative care is that of promoting quality of life in the face of death. People may ask if it is even possible to help families experience moments of happiness and find solace when any realistic hope of a return to health is gone.
If there is to be any chance of this, it must begin with considered and meaningful communication with the child and with family members.
There is no easy formula to do this. Every child, family and situation is unique. Their specific circumstances will dictate: how to approach the difficult topics; what questions to ask; and how much information to share at any one time.
It has been said that one of the biggest communication problems we encounter is that we do not listen to understand. We listen to reply. So, it’s vitally important to know when to talk and when to stop trying to find the ‘correct’ answer and just listen.
Time and setting
Choosing the appropriate time and setting for such conversations is important. Questions that can enhance difficult conversations, around illness and death with children and families, include those about themselves and what gives their lives meaning; what worries them the most; what they hope for; and how they find their strength.
“Ask, tell, ask” approach
If you’re the one providing information that is difficult to hear, experts suggest an ‘ask, tell, ask’ approach. This ensures you first determine exactly what information the person wants. Provide the information as simply and as sensitively as possible. Then ask another question to make sure their question has been answered and the information has been understood. Just taking the time to listen to parents and children, and exploring their wishes, hopes and fears is likely to reduce the intensity of their suffering.
Involve the child in decision-making
Actively encouraging children to be involved in difficult decision-making in their care and treatment, in an age appropriate and sensitive way, is another cornerstone of good children’s palliative care.
This may feel counterintuitive to some adults, not wanting to burden children any more than they need to. However, apart from it being the child’s right to be involved in decisions that affect them, very sick children have often had so many other choices taken away from them that involvement helps to relieve feelings of helplessness, giving back some of their autonomy.
Always taking into consideration the child’s age, understanding and willingness to participate, these discussions may include:
- Giving them permission to ask the hard questions about their illness and prognosis.
- Allowing them to express their own thoughts and feelings related to decisions on how much medication they should be given e.g. enough to make them sleep or a little less so that they can be awake and aware.
- What life support measures they want in an emergency situation.
- Where they would prefer to be if and when they die, and who they want to have with them at that time.
- What they want to happen after their death.
The importance of asking these hard questions and having them answered is evident in Asiphe’s story.
Nine-year-old Asiphe had been receiving treatment for leukaemia for two years. He initially responded very well but sadly relapsed, developing brain involvement and deteriorating vision. As a last attempt, the haematologists tried radiotherapy but within a few sessions it was clear the treatment was not helping.
The palliative care specialist met with Asiphe and asked him how he was doing. “Doctor, I want to know just one thing, is my cancer gone or is it not gone?” With a lump in her throat she replied, “It’s not gone my boy. It’s getting worse. That’s why you can’t see so well.” He smiled with an aura of understanding and asked, “Oh, so what are you going to do?” She responded by asking, “I don’t know, what do you think I should do?”
Emphatically Asiphe told her that he was not ready to stop fighting and to give him more chemo or put him back in the machines. So, his radiotherapy was continued but a week later he told his mom, “I am coming home. There is nothing more they can do for me.”
When his palliative care doctor approached him to ask if he was sure this was what he wanted, he replied, “Oh Doc, your machines and chemo didn’t work. The only one who can help me now is God. Let me go home where they can pray for me. I am not scared to die. I just worry about my mom.”
A few months later Asiphe died at home surrounded by family, just as he wanted.
There are excellent resources available online that can be used to help with these conversations. The International Children’s Palliative Care Network (ICPCN) website provides links to a number of these.
MEET OUR EXPERT – Tracey Brand
Tracey Brand is co-founder/director of Umduduzi, Hospice Care for Children. She is an honorary lecturer in the Department of Paediatrics, UKZN Nelson Mandela Medical School.
MEET OUR EXPERT – Dr Julia Ambler
Dr Julia Ambler is the co-founder/medical director of Umduduzi, Hospice Care for Children. Through this NPO she consults in childrenís palliative care and trains health professionals and medical students.
MEET OUR EXPERT – Sue Boucher
Sue Boucher is the director of communications for ICPCN. Her work includes providing training in the psycho-social aspects of providing hospice and palliative care to healthcare professionals.