As staff, our concerns may be:
Knowing how to respond to difficult questions
- What are we allowed to say / what is expected of us?
- Emotional impact on us and our impact on the patient
- Knowing what to say
- Responding in a helpful way
If we were asked questions:
- We may give the wrong answer or incorrect information
- We might say something that upsets them
- We don’t want to appear as if we are passing the buck
- Are we up-to-date with the current medical and or emotional situation and decisions?
- Do we know what the latest update is and what has the patient been told?
Managing boundaries around confidentiality
Things that can help:
- Having a named nurse
- Good handovers
- Checking with the nurse who is looking after them that day.Children, young people and their siblings have a far greater capacity to cope with difficulties and sad truths than adults often realise. They will almost always know that something is amiss, even if they do not understand exactly what.
Preparation for loss
Staff, particularly the CLIC Sargent social worker, the Paediatric Oncology Outreach Nurse Specialist (POONS) and the doctors will have tried to guide and prepare the child or young person and their family as best they can for the time to come, through consultations (in the home, hospital or hospice) and via providing appropriate literature. It is individual to each family what form this preparation takes.
Families’ coping tactics vary from open communication and awareness - where decisions and the child or young person’s dying wishes and fears are openly discussed - to closed awareness and apparent denial when families will not acknowledge or discuss what is happening. It is, however, widely accepted that a child or young person with a terminal prognosis is most often aware of their impending death even if they do not openly communicate that awareness [1].
If their impending death is never discussed, the child or young person may not have the opportunity to raise their concerns and fears. This may be as they do not want to upset their parents/carers and wish to protect them [2, 3]. The unit team works with each family individually to help them cope in the best way they can.
At the same time, staff strive to ensure that families know that the child or young person has a right to know what is happening to them and should be given the opportunity to access staff on their own, if they wish, in order to have the opportunity to talk. Children (when appropriate) and young people are always given the choice of being present, or not, at Consultant consultations.
Techniques to assist with difficult conversations
For example, when a patient or family member says something that shows they may be worried about something:
Examples:
Q: “Do you think they will get better?”
Q: “Will he/she be in pain when it happens?”
Exploration
Ask questions: don’t feel you have to give the answer
- “Is this something you would want to talk more about?”
- “It sounds like you are worried about that – is that right?”
- “Tell me a bit more about that.”
- “Do you want to talk some more about this?”
- “What do you think would be helpful?” : this can lead to signposting to the Paediatric Oncology Outreach nurse specialist (POONS) in the first instance or other services or professionals if relevant.
Paraphrasing
Repeating the question or statement back to the child or young person:
Q: “Am I going to get better?”
Possible answers:
- “Are you going to get better?”
- “What makes you ask that question?”
- “Why do you ask that?”
Give clear, short and simple answers
Sometimes the conversation does not go where we imagine it will.
Q: “Why am I not having chemo anymore?”
A: "Why do you think you aren't having chemo anymore?"
“The chemo wasn’t really working and was just making you sick"
It is unusual for a child or young person to ask a professional outright a question such as: "Am I going to die?" More normally, they may touch on or make an obscure reference to their situation and then after some discussion change the subject. They may ask about an event that is a long way in the future to test how long they might have, such as "I'm hoping to go to America next year, do you think I'll be better by then?" They might ask little bits at a time.
Some examples of acutal conversations that have taken place follow:
Patient: “I hate the view out of my window.”
Nurse: "Why?"
Patient: “Because you can see a cemetery”
Nurse: "Because you can see a cemetery?"
Patient: “Yes and there’s dead people in those graves.”
Nurse: "Yes, there are."
Patient: “Could you get me a drink?”
Patient: “So the scan isn’t good.”
Doctor: "The scan isn't good."
Patient: “And the chemo’s not working.”
Doctor: "No. No, it's not."
Patient: “And radiotherapy won’t work?”
Doctor: "I am afraid not."
Silence
Doctor: "Would you like to ask me anything else?"
Patient: After a pause “No.”
If the topic of death does arise, ask the child or young person what they understand about the situation. Listen and paraphrase what they have said, using the language they have used. Use open and exploratory questions about their feelings.
It may be very difficult and emotive to discuss these topics and it may provoke personal feelings of your own (link staff support ). Don’t be afraid to address the concept of dying, gently but directly, if appropriate to the conversation. Many families in this position will appreciate such honesty.
Some families and many children and young people may never openly acknowledge the prospect of the forthcoming death and this should also be respected. However, it is desirable to offer children and young people the opportunity to talk so that if they have fears and worries they are not alone with them.
Allowing children and young people the opportunity to talk
- Ask questions – e.g. ‘how are you feeling today?’
- Allow quiet moments sometimes - instead of talking through silences. This can give them the space and time to share their thoughts
- Visit them regularly
- Meet with patient on their own, with their parent’s/carer’s consent
- The above are all applicable for other family members too. Allow yourself to be guided by them.
- Giving space to talk
- Positive and open body language
- Allowing quiet moments for them to gather their words or thoughts
- Sitting down
- It may seem appropriate to give contact, e.g. touch hand/shoulder
- Don’t dismiss their feelings by saying things like:
- “You have to think positive.”
- "You must not say that.”
- Be aware of other professionals, or services, that could be relevant or helpful if that’s what they need.
Sibling care and communication
We gently advocate open and honest communication with siblings, as much as the family can manage. If they can be told that their sibling is seriously ill, the name of the illness (if they don’t know it already) and the parents/carers or professionals’ understanding of what may happen. Involving siblings in this difficult time also gives them an opportunity to contribute, feel some sense of control and inclusion – and have their fears answered.
“If they (siblings) are ‘protected’ from the truth, they will learn a … lesson in distrust… at a time in their life when it is important… to continue to trust the people they love most.” (Winston’s Wish)
Preparation for the actual death
It would be very unusual for a family in this situation to attempt resuscitation or telephone emergency services. The fact that it is better not to, is openly discussed. (Link Palliative Care)
When the child or young person is in the end of life phase, if the conversation has not happened beforehand, the Paediatric Oncology Outreach Nurse Specialist or Consultant will discuss what to do at the time of death with their parents/carers.
Parents/carers are reassured there is no rush to do anything at the time of death. They may call the professional on-call, or not, depending on how they feel. If their child dies in the night and they wish to wait until the morning that is fine. If they are at home or in a hospice, a GP will need to see the child or young person to complete the death certificate. Again there is no urgency to call a funeral director, but when they do they will advise about the pros and cons of embalming or not, keeping the body at home and funeral arrangements.
Links to further resources and courses
Together for short lives
Winston's Wish - the charity for bereaved children
The knowledge network
Website advice and video scenarios
Breaking bad news
http://www.breakingbadnews.org/
CCLG resources
Facing the death of your child A comprehensive guide for families covering all aspects of bereavement, before and afterwards.
Bereavement: Sources of help and support This booklet contains suggestions of sources of support for families who have lost a child from cancer. It may be helpful to bereaved parents, grandparents and other family members, as well as to those such as teachers, health professionals and friends who are offering support to the family.
CLIC Sargent resources
If treatment fails: information for young people
RCN resources
Breaking bad news: Supporting parents when they are told of their child's diagnosis
Courses:
Sage and Thyme Training offering staff a structured approach to how to manage difficult conversations whilst allowing the conversation to be patient lead, is available in some Scottish Health boards.
References
[1]Beale E A, Baile W F, Aaron J (2005) Silence Is Not Always Golden: Communicating with Children Dying From Cancer. Journal of Clinical Oncology 23:15: 3629-3631
[2]Bluebond-Langer M (1978) The private worlds of dying children. Chichester: Princeton University Press
[3] Judd D (1995) Give sorrow words working with a dying child. (3rd Ed). London: Whurr Publishers Ltd.