World Hospice and Palliative Care Day:
IAPC’s Special Feature on
Paediatric Palliative Care-7
About the Author: Mr. K. V. Ganpathy is a Clinical Psychologist and a Volunteer Counselor at the Department of Palliative Medicine at Tata Memorial Hospital, Mumbai, and also the CEO at JASCAP, an NGO dedicated to cancer patients and their families. (firstname.lastname@example.org)
A diagnosis of cancer uproots normalcy in a child’s or an adolescents’ life; and during this time, parents can work with the health care team, the strongest allies. This act will not only foster the trust between the child and the health care team, but also help in restoring the quality of life, of children with advance cancer.
Clear, empathic, and individualized communication facilitates trust and relationship building between clinicians, patients, and families, encourages shared decision-making, and provides everyone involved with an valuable opportunity to integrate goals of care and quality of life into the holistic management plan. In palliative settings, such conversations in itself may serve as a therapeutic intervention enabling the families to re-frame hope and allow the clinicians to alleviate suffering, and eventually mitigate complicated bereavement.
However, the potential barriers to having conversations centered around the prognosis, makes the entire communication difficult but yet necessary.
- The first stumbling block is the resistance of the caregivers to involve the patient in the discussion. Reasons range from family dynamics, perceived failure by caregivers of their duty to protect their child (belief system), or the argument that ‘he/she may feel de-motivated and die before the actual event’.
- In the days of the pandemic,masking not only covers major portion of your face, but also the emotional expression. Displaying empathy, picking up non-verbal cues, missing of reassurance by the occasional touch are a few impediments imposed due to compliance with pandemic protocols.
- The lack of resources, sometimes, on the part of health care team members to respond to the aftermath of sharing prognosis viz., patient’s emotional reaction can be inhibitive.
- The poor literacy of caregivers and their inability to understand the disease, strengthens their denial in the form of misplaced hope and futile treatment.
- Lack of open communication between the caregivers and the child/adolescent sometimes makes exploring their concerns more difficult.
- Having end of life conversations with Children/adolescents with chronic symptoms like pain or other severe disabilities can be very daunting.
- The biggest barrier in our OPD settings, the need to start and finish such a difficult conversation in one single sitting, especially if it’s an outstation patient. Also, huge patient population, not supported by adequate physical infra structure can be a hindering factor.
Assuming that one is successful in breaking collusion, anger, denial, and other barriers and is ready to discuss the prognosis with a child or an adolescent, it is essential to have clarity about the goals of communication i.e. the outcomes expected from such conversations.
High-quality communication in these circumstances is critical for both minimizing distress and promoting dimensions of resilience.
WHAT WE DO
I share here, some experiences and learning’s which has helped our team to conduct effective end of life conversation with the patients. Over and above empathy, active listening, rapport building etc., which are important, one needs to also be mindful of the following:
- What you tell the child needs to be tailored to his or her developmental age and should be based on what you think he or she is able to understand.
- It’s extremely important to know beforehand the status of the child in the family (eg.only son, only child, only daughter or only son with a sibling daughter or only grandson in the entire family etc.). This helps in knowing the child beyond his/her disease. It’s the first step towards breaking the barrier between you and the child.A single conversation with the child is usually never sufficient. Extending the duration of a single meeting can result in an information overload which can be counterproductive. We therefore have frequent and brief conversations with the child so that there is enough time for the child to absorb the information. In fact, the first meeting usually is to build rapport such that it helps in minimizing any procedural stress experienced by the child. The child carries with him/her the image of the patients, with some disfigurement, seen in the hospitals during their visits, which can be very traumatic. Keeping the child busy with some kind of art or play can have a calming effect. This can result in the child feeling less threatened and opening up.
- Generally, parents believe that they protect their child by avoiding discussions with the child/adolescent, about the disease. We educate the caregivers that being protective of the child does not necessarily mean not disclosing the right information. On the contrary, children who are not told what is happening or why, are often fearful and may imagine the worst. . More often they recall stories of evil vs. good which can at times breed fear.We have noticed that being open and direct helps the child to cope with the treatment and the painful procedures along with promoting a sense of calmness and control over the situation which is particularly important in adolescents and teenagers. More importantly, the right communication assures them that they are loved, supported, and surrounded by people who care about them.Remember that the biological age and the developmental stage of a child influences their understanding of death & dying. Largely, children express their grief of separating from their loved ones, it can be a teddy bear, school, siblings or parents. Sometimes they express closure to mean reversibility of the event. However, for an adolescent, the grief is more
- about failing in responsibilities of unfinished business, and the resultant anger or guilt and hopelessness.
- When frail looking parents wheel in their adolescent son/daughter to the OPD, attention must be paid to his/her silence, which often hides myriads of emotions like, anger, guilt etc. For adolescents, there are prominent psychosocial distress, arising out of his/her inability to navigate developmental milestones along with the disease and its treatment, which can be very daunting. They want to be treated like an adult. They wish to know details of the disease. Yet, at the same time, they do not have the necessary resources to handle their emotions. The grief for an adolescent is all about truncating their goals and aspirations abruptly and having to become dependent on the caregivers, due to disease and the treatment, while he/she was all set to explore and give wings to their independence. Socially withdrawn, and guilty about not being able to support the family can also lead them to harbor thoughts of self-harm. However, for a pre-teen or a school going child, the distress is all about disruption in the normalcy of immediate nature, such as not being able to continue schooling, disconnection from their friends, restrictions in daily activities, comparison with sibling etc.
Therefore, communication needs to be hybrid in nature, to accommodate some open ended questions under a larger structured format.
GETTING THE HANG OF TELL TALE SIGNS
- We have seen, children experiencing fear while looking at other patients with treatment related disfigurement as they wait for their turn at the OPD. This can cause enormous procedural anxiety.
- Parents disciplining their child by creating a picture of a doctor or a hospital as a source of punishment can be a major stumbling block. We need to address such fears and procedural anxieties by creating a friendly environment through Art & play therapies. Allow your child the fullness of childhood for as long as possible.
- Children who do not know about their cancer use their thoughts to fill in the knowledge gaps. For example, they may think that their illness is a punishment for doing something wrong. Furthermore, not knowing what is wrong or what to expect may cause the child anxiety, stress, and fear. Most children already know that something is wrong. Hence, starting the conversation about where the child has come, what happens in that place and why he/she has been visiting the place etc. can open the window to gauge the child’s awareness about the illness.
- Children may share similar reactions as adults upon hearing that their cancer has advanced. These reactions could include shock, denial, fear, anxiety. Allowing the child to talk about his or her fears is critical to foster a climate of trust.
- Look for signs that indicate that the child is ready to talk. Signs may include asking questions or bringing up the subject of death. Be mindful to look for signs that your child may unwittingly show, like changing the subject, looking away, fidgeting, or playing with toys. Allow younger children to communicate through play or art. For example, your child may find it easier to talk about the feelings of a sick teddy bear or a child in a picture.
- Look for teachable moments, or everyday opportunities to talk about what the child is thinking and feeling. It helps to ask the family for details about their parents, the child’s relationship with them etc. before meeting the child. Teachable moments may include the death of a pet or the illness of a character in a book or a movie or a grandparent. Look for hidden meanings in your child’s questions or comments. For example, your child may ask, “What happened to Grandma after she died?” This may be your child’s way of asking what will happen to him or her.
- Use simple and direct language that your child can understand. Do not use misleading or confusing terms such as “passing away” or “going to sleep.”
- One of the sources of worry for a child is the fear of being left alone. Reassure your child that he or she will not be alone. It is important for children to know their parents will be by their side with continued love and support.
- Reassure your child that all pain and suffering will go away after death and never return.
- Remind your child of the special things that he or she has done and the teachers, friends, nurses, and others who will always remember him or her.
- As for adolescents, while the family experiences anticipatory grief about the impending multiple losses, it is equally important to give him/her “permission” to die. Many dying children feel guilty for leaving their parents and tend to worry about what will happen to their family without them.
- Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life.
Finally, having an open and direct communication can help the health care teams to expertly disclose diagnosis, facilitate the development of prognostic awareness, navigate advance care planning discussions, identify goals of care, provide comfort at the end of life, and support both the patient and the families during this difficult journey. Your communication is as good as the comfort you bring to the child/adolescent at the end of their life. Finally, the realization is ‘The goodbye will wipe the tears of the family members’.