Communication to Pediatric Cancer Patients and their Families: A Cultural Perspective

Paternalism in medicine

Patient autonomy has become widely popular and given the traditional paternalistic style of medicine a negative connotation. Recent literature has focused on patient and families rights and the need to give due importance to their wishes in treatment decision making. However, many patients themselves may want the traditional physician’s role of the sole decision maker, as described by Rodriguez-Osorio and Dominguez-Cherit.[2] A middle path is required, the patient and families should be allowed to discuss and determine the course, as long as this is an informed decision and they are aware of the alternatives, risks and benefits.

Training and skills in communication

Without systematic training, breaking of bad news and discussions of cancer prognosis will fall short of existing guidelines and patients’ needs and expectations. Consultations of this type can be difficult and painful. Many doctors lack counseling skills and frequently delegate the important task of giving bad news to their resident, the palliative care team or may superficially discuss recurrence of disease without imparting details of what this means to the patient. Use of euphemisms, for relapse and death are common. This can lead to families often being unaware of the gravity of the situation, as they cling to hope, until the truth dawns on them. This inadequate communication can lead to distress, disappointment and anger towards the team, despite the care being provided.

A study amongst Clinical Oncology faculty showed that as few as six per cent had received formal training in delivering bad news. Many faculty members rated their own skills to communicate bad news as inadequate. The randomized clinical trial of communication skills training with facetoface learning with patients or simulated patient, and feedback by Arnold and Koczwara,[3] has provided research evidence of benefit of this technique.

Inadequate physician-patient communication skills may lead to psychological distress, increased anxiety and poor psychological adjustment to cancer which has been elucidated by Liénard et al.[4] Reducing the level of patients’ anxiety is important because anxiety may lead to emotional distress and functioning disturbances as found by Arnold and Koczwara[3] and Liénard et al;[4] this may interfere with patients’ compliance as found by Girgis and Sanson-Fisher.[5] A study by Liénard et al,[4] on the effect of training, however, did not show any measurable impact of training the reasons for this finding are perhaps because counseling is an inherent skill, or that this skill is not well assessed by current research tools. However, practice, and following guidelines for developing expertise in communication and receiving feedback from mentors does make the task more structured and less stressful to the physician or healthcare provider as shown by the work of Girgis and Sanson-Fisher[5] and Maguire.[67]

Knowledge of counseling

The Kübler-Ross model, also known as the five stages of grief, is a concept that is familiar to most. It states that the process of dealing with a terminal illness or news of cancer has five discrete stages - denial, anger, bargaining, depression and acceptance. This has created awareness and understanding about the grieving process. However, all people do not go through the process in sequence, or reach to acceptance. Often people experience several stages in a “roller coaster” effect - switching between two or more stages, returning to one several times before being able to move on, as described by the pioneering work of Kübler-Ross.[8] The limitation of the Kübler-Ross model is that it neglects the effects of other stressors which act as an impediment to going through the normal grieving process e.g. lack of support, financial problems, the effect of illness on the person, which were high- lighted by Kastenbaum.[9]

Going through the process takes time and communication needs to be strong, all members of the team should reenforce the same information as the family will not be able to comprehend much during this stressful period. Patience is needed to repeat information and ensure correct processing, and avoid confusion.

Pediatric palliative care

Most physicians feel a burden to cure the patient, and failure of therapy is often considered a failure by the patient to respond to treatment or a personal failure by the doctor. Caring for children is a very emotive experience, to see a child suffering is sad, and a child with a terminal illness is especially difficult, as it is a life cruelly shortened and unfulfilled. Many health providers will identify patients with their own children of the same age, or are hampered by feelings of personal sorrow, and find it difficult to communicate appropriately with the families. Communication often focuses only on the next treatment to be done, and emotional or distressing facts are not discussed. Healthcare Providers inhibitions, are a major hurdle to effective communication. Healthcare providers may need to seek counseling themselves or at least discuss their issues with colleagues to prevent burnout as explored by Whippen and Canellos.[10]

Many teenagers and young adults are kept in the dark by their families and palliative care team to avoid distress and fear. Fear of the unknown can be a greater stress factor; loss of autonomy can frustrate the child. Not talking to the child puts up barriers to communication, making the child afraid to ask questions about death or suffering. Further, the child may be deprived of counseling to alleviate the distressful emotions.

Cultural communication

In India there are many socio- economic and cultural issues that can become barriers for treatment. There are parents who have reservations about western medicine, feeling they are too strong or too hot for children. Many families use complementary medicines as well, but are fearful of informing the treating doctors. The parents are often unwilling to undertake any type of major surgery or treatment that will compromise on the female child’s physical appearance or lead to permanent disability e.g. deformity, loss of vision; as it will hamper future prospects of marriage. If therapy is likely to cause infertility there are parental concerns about such treatments, as they fear societal stigma for the child when she grows up.

Western concepts of telling the cancer patient about the disease and involving the patient/or family in treatment making decisions are alien to the Indian culture and may add to the patients distress. Collusion to keep the patient unaware of the diagnosis is well described by Chaturvedi, Loiselle and Chandra.[11] The family often believes that telling the truth will rob the patient of hope, as elucidated in Moore and Butow.[12]