World Hospice and Palliative Care Day:
IAPC’s Special Feature on
Paediatric Palliative Care- 3
The following conversation takes place on a random working day at Tata Medical Center, Kolkata. Shreshta and Soumitra usually have a routine discussion about the overall status of the patients seen, at the end of the day.
Soumitra: Shreshta, did you check on Mrs. Ahuja today? How do you think she is holding up?
Shreshta: I spoke to her briefly. She is slowly coming to terms with her illness. She hates the fact that she is now completely dependent upon her carers and can’t do things on her own. There is a sense of loss of autonomy, and this is upsetting to her…
Soumitra: True, the loss of autonomy could indeed be emotionally debilitating…
Shreshta: (interrupting) I…also met Aman’s parents in the corridor. They had come to donate his wheelchair. They were also looking forward to opening a donor fund in his name.
Soumitra: Seems like they are coping in their own way…
Shreshta: I think so… they couldn’t thank us enough for our support; they mentioned that letting Aman know about his condition opened up several different avenues… They mentioned that they couldn’t believe that Aman was so mature. I believe that it was Aman who had insisted that there be a donor fund with his name and that he wanted all his belongings to be distributed if that was of help to anyone. It seems like his parents have found a new meaning in trying to fulfill Aman’s wishes!
Soumitra: From my experience for over the last 10 years, I have found several families to be in a better place after their children have been informed of the palliative nature of their cancer, as it turns out that during these trying times it is the children who make mature decisions, something that can leave their families in awe…
Shreshta: Well, that brings me to a question I’ve been longing to ask for quite a while now. Communicating with a child with cancer is one of the areas that you have been interested in. Could you please share your experiences? How do we engage the parents of these children? How important is it, to involve children themselves in these clinical communications?
Soumitra: Paediatric palliative care is a meaningful yet challenging career choice. Communications may be particularly difficult as you will need to engage with children, adolescents, and their family members when they are going through the most difficult phase of their lives. You need be empathetic and feel for the patients, and their family members. At the same time, you should be able to manage your own emotions. Communicating appropriately engages the children in the treatment process and often helps them manage their symptoms better.
Shreshta: I find it challenging to communicate with this group of children. Have you ever faced any challenges while dealing with these communication tasks?
Soumitra: That’s a sombre question! Over the years, I have worked with several teams around the world, particularly in the United Kingdom and India looking after children with life-limiting conditions as cancer and other conditions as cystic fibrosis. You may be experienced in treating a particular condition but having the end of life communications with children, adolescents or their parents is emotionally draining for everyone. If clinicians reflect and try to learn some of the principles of communicating with patients in these situations, overtime, they may become more skilled. But it is never easy. Learning to communicate appropriately is a lifelong learning process and practicing it effectively, not only helps the patient but the entire team looking after the child.
Shreshta: What is the best time to start this conversation?
Soumitra: Clinicians should become familiar with the patient and their family members before embarking on the task of communication. You need to decide what you need to share with the parents and when. Some of the things that you may end up discussing may not be what parents want to hear from you. But they will be thankful to you later on. Knowing helps them to prepare for the death and makes it less abrupt. Pacing the communications at the right speed is important. As mentioned, at times they may not expect bad news; yet you are going to share it with them.. At other times, they may have already guessed it in advance.
In paediatric oncology, the death of the child may happen after a relapse or recurrence of the disease and disease progressing despite second-line treatment. This is when parents will have a broken dream, as they have put in so much efforts to get better the first time. The other possibility could be that the child presents with an advanced disease at the very first presentation to paediatric oncology teams when curative treatment is not possible. Parents are shocked by the sudden turn of events. The last and the most upsetting situation is when death approaches unexpectedly following an infection or complication of treatment. This may be difficult emotionally as the intention of actions and outcome were different.
In each of these situations, one needs to comprehend that parents may be at different phases of anticipatory grief. The communicator has to take into account, the medical condition of the child, parental and the child’s understanding of the situation, and the level of emotional support that is available for the family. I would suggest you to first get to know the child and his family before you embark on the communication task. Once the parents know you as one of the clinicians looking after their child they will be more receptive to what you have to say.
Once the team is sure about the end-of-life situation of the child, the earlier this communication begins, the better it is for the family to plan for the time left. ‘Time is all they have and don’t’. It is necessary to end the communication with a mutually agreed plan.
Shreshta: Who should be communicating? Does it have to be any specific person?
Soumitra: Many teams that I’ve worked with had more than one clinician communicating with the family together. This could be a combination of a doctor and a nurse. Rarely, there could also be other team members like a psychologist or a child psychiatrist. This communication must be led by clinicians who are in charge of the treatment of the particular child. The parents will likely have questions regarding the availability of different treatment options for their child and having the specialists on board will help address such questions promptly.
Shreshta: How should a team prepare for end-of-life communication?
Soumitra: Since these are difficult communications, it may be a good idea for the team to sit together before the meeting and discuss the clinical condition of the child. The team should agree on the management plan of the child. If there are any disagreements or different points of view, these should be addressed by the senior clinicians before the meeting begins. In my experience, this is of paramount importance because it helps in getting the entire team on board and avoids fragmented communication from different team members to the parents which could lead to misunderstandings later on.
Shreshta: Once the team has decided, what could be the first steps?
Soumitra: There are hardly any ‘one size fits all’ solutions to difficult tasks in any sphere of life. However, having a structure of the communication chalked out in your mind may help. You need to be flexible as things may not go as per your plans.
Shreshta: What about the children or the adolescents?
Soumitra: I’ve found that both children and adolescents prefer to be informed about what is going on with them. However, there may be different methods you use to engage a young child and an adolescent. Young children are often more interested in the ‘here and now’; what procedures they need to undergo, and may ask about going home. Some children guess that things are not going well even if they have not been told so explicitly. They are observant of the behaviour of the adults around them. They seem to catch up on the fact that their family members may have stopped scolding them for anything they do. They may also feel that their caregivers look upset most of the times and become evasive when they talk about the disease. Some children may even be protective of their parents and not want to upset them by discussing end of life and beyond. They may have seen other children with cancer passing away. They may suffer silently. Start on a neutral tone and allow the child to express his or her thoughts or emotions. In this way, you remain the sounding board and not necessarily be someone who has all the answers. If they ask specific questions you could ask them why they want to know the answer to that question or what is in their mind when they ask that specific question. This is a good way to get in touch with a child’s private world. It usually leads to further discussions. The child will know that there is someone with whom they can discuss whatever comes to their mind.
Shreshta: So according to you, clinicians need to be grounded and try and remain in touch with the child’s internal world. This is only possible if they are willing to have these discussions with the young person. They need to be familiar with the finer nuances of the child’s disease, illness, and predicament. This is likely to be helpful to the child and his or her family members. When it comes to older teenagers and adolescents, is it any different?
Soumitra: Older adolescents usually prefer to have a more straightforward discussion. They may have a clearer understanding of life and the end of life. You may have to address some of the questions directly. Adolescents have a right to know and discuss their end of life. They often want to say goodbye to people they love and make some plans for the future when they are no more. However, before embarking on this conversation, it is customary to get the parents into confidence. It is a process that should never be rushed.
Shreshta: This discussion was highly insightful and it feels worthwhile to reflect on my journey as a psychologist that i went through over the past few years when I worked with children with cancer. Aman has managed to leave a mark on my life too! We need to make time for such reflections to help us make sense of what we do and to process our own emotions.
Datta SS, Cardona L, Mahanta P, Younus S, Lax-Pericall MT. (2019) Pediatric psycho-oncology: Supporting children with cancer. In Rey JM, Martin A (eds), JM Rey’s IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: Association for Child and Adolescent Psychiatry and Allied Professions. (Click here)
Datta SS, Ojha A, Saha T et al (2019) What do you need to learn in paediatric psycho-oncology? Ecancermedicalscience 13: 916. (Click here)
Illustrations: Rajendrani Mukherjee
Dr. Soumitra S. Datta, Consultant Psychiatrist, Tata Medical Center, Kolkata; Visiting Researcher, Institute of Clinical Trials & Methodology, University College London. Email: firstname.lastname@example.org