INTRODUCTION
A famous saying is that sword and words have the same letters; strangely they also have the same effect if not handled properly.
Disease is an entity comprising of some physiological disturbances frequently coupled with anatomical changes and histopathological derangement that manifests in the form of symptoms and signs. Patient on the other hand is an individual who feels pain, and agony; needs help and support for self and personal care, and requires careful evidence-based measures to diagnose the disease and institution of rational therapy for cure or palliation. Patient is not alone in this hour of disease and discomfort but there are family and friends, and healthcare providers around. It is easy to prescribe medicines and surgical interventions to the patient; changes in lifestyle and diet can also be very easily advised. However, acceptance of the reality, gravity and long-term prognosis of the ailment by the patient and the family, and coming to terms with the social impact of the disease and quality of life may differ from person to person and family to family. This may add many dimensions to the disease management. Treating a patient and treating a disease is, therefore, not same. It is easy to treat disease but extremely difficult to treat a patient.
An infant or child patient throws some more peculiar challenges. If their capacity to react to disease insult is limited, then more often it is stereotypic to many serious illnesses. Initially parents may not consider signs and symptoms serious as they continue to “play” and behave “normally” till the disease is well entrenched with complications; it is late. Often parents feel guilt and are inconsolable seeing their child in serious and grave situation.2
Once a child patient is admitted in the health facility, the mother remains the main caregiver except in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU). The routine of the entire family gets disturbed, parents do not get enough rest, and absence of facilities for basic comfort and unfamiliar and not-so-friendly hospital rules and regulations make the parents and other relatives jittery and frustrated. This sets the milieu for patient/family dissatisfaction and aggressive behavior and results into accusations and complaints landing in the consumer court.
Active communication with the patient and family may mitigate some of the concerns and anxiety of the parents including ethical dilemma and social issues. Counseling is the way of working with the people. Counseling truly reflects empathy towards the patient and the family and empowers them to understand the disease, its treatment and prognosis and to take most appropriate decision best suited to their situation. Spending some time with the patient and family gives big dividends to the treating physician and nurses. This helps building trust between the patient/family and the healthcare providers and gives confidence to them to follow treatment plan and advice. A good rapport and communication also enhance early recovery and well-being of the patient and ensures timely follow-up.
However, it is important that doctors should have detached empathy with the patient and are not involved sentimentally. Otherwise, it may lead to “burn out” and “sympathetic” actions which are perceived irrational. This may also lead to insinuations and doubts by the patient, family and friends later on. The attributes of active communication are described in Box 1. Counseling is to give professional help and recommendation to someone. There are three components of counseling (Flowchart 1).
COMPREHENSION AND UNDERSTANDING SITUATION
It is extremely important to first find out sociocultural background, economic status, education level, religious beliefs, community practices, and past experience of the patient/family before offering any help and support regarding the present disease and its sequelae. The learning of the above aspects may be facilitated by a set of steps, described in Box 2.
MAKING APPROPRIATE AMBIENCE AND PRESENTATION
Active communication and counseling should be done at a quiet and reasonably comfortable place. All family members—parents, grandparents, friends, and distant relatives—present at the time of counseling should be invited, greeted, and seated in the chair. Pediatrician/senior resident/junior resident should also sit in the chair without any table between the doctor and the attendees to remove any barrier. Doctor should introduce himself and then ask all the person their name and relationship with the patient.
Maintain social distance while talking to the patient/family; neither too close nor too far. Always look towards the person you are talking. It is a common mistake that while talking to the patient or her relative, the doctor is busy with the papers/case sheet or calling other staff for some work or attending phone.4
Never look towards the watch while in conversation. This indicates that you are in a hurry and do not have enough time for them. Always show to the patient and the family that you have plenty of time for them and that you enjoy talking to them. When patient talks or family shares some facts then show response by nodding, smiling or saying “achha”, “un hoon” or exclaiming “oh my dear” or “is that so”, etc. Touch and patting are a great gesture and shows respect, friendship, and bonding. Doctor can appropriately touch and pat the patient and relatives else you can touch the child. But be careful of the societal values. In our culture, male doctor touching a woman is generally not appreciated but with time once you command faith then you can gently pat the mother/father on the shoulder assuring her/him of your availability for any clarification or consultation any time. The above measures are also referred as nonverbal communication or body language. The nonverbal communication skills are summarized in Box 3.
Adequate measures should be taken for privacy and confidentiality. For eliciting history of HIV and some hereditary disease, it is better to talk one to one or in front of a person whom patient or family is comfortable with. Do not show anger and make such gestures which amount to disapproval or inappropriateness. Always end the conversation with saying thank you and reassurance of your availability and support anytime.
ASKING OPEN OR FACTUAL QUESTIONS
Questions are of two types, open question and closed question. An open question is one which elicits a response from the patient/family. It is very useful in taking history and learning situation of the patient/family in shorter time and without speaking much.5
It allows more time to the patient/family to speak and encourage them to share more information. The open question starts with when, how, why, where, etc. The closed question elicits answer as yes or no. Patient does not feel like telling details and is frequently leading type and ends up with judging words. For example, is your child well? It is a closed question because answer to the question will be either yes or no. Here “well” is a judging word that may make mother confused as to what exactly you mean by “well”. If you ask an open question, then judging word will disappear. How is your baby?
If you want to know whether mother is breastfeeding? You may ask the mother “are you breastfeeding?” The answer may be, yes, I am breastfeeding, or I am not. It does not tell anything more. But if you ask the mother how are you feeding your child? The answer may be, I am breastfeeding but sometimes my child cries more in the evening, so I give powder milk by a bottle. I do it two to three times in a week. So, mother gives more information about feeding the child. Factual question is a type of closed question, but it is asked when factual information is required, e.g. what is your age? how many children do you have? are you pregnant? etc. Example of closed and open questions are in Table 1.
PARAPHRASING OR REFLECTING BACK WHAT THE PATIENT/FAMILY SAYS AND THINKS
Listen to the patient/family patiently. In order to know more about a point or narration, patient is making or expressing his/her opinion. It is advisable to repeat the same or paraphrase the sentence said by him/her. Reflecting back encourages the parents and patient to tell more about their concerns and apprehensions and reassures them that doctor is listening to them and that healthcare provider is responsive and interested.6
Example, mother says “I do not have enough breast milk that is why I give cow's milk twice a day, in the morning and night, as my son is 4 months old now”.
Doctor can say “you think you do not have sufficient breast milk” or “how did you get this idea?” or simply “you think so”.
Mother will now give reasons and tell more about why she thinks her milk is not enough for the child. She may inform you that she has to join job next month and she wants that child is able to feed on the animal milk while she is away in the office. She further informs that her sister says it is better to start bottle feeding at least a month before joining duties as child can learn to take top feed. Thus, reflecting back on the patient or parents helps you understand the situation. It will now be easy for the doctor to give information on the signs of insufficiency of breast milk and offer suggestions as to how a woman can breastfeed when she is away from her child.
You will appreciate that disagreeing with the mother or questioning her on her decision of top feeding or telling her about the dangers of top feeding in the beginning will vitiate the atmosphere and make mother/father unwilling to follow your advice and suggestions. However, one should be careful that while you are reflecting back you do not sound sarcastic or judgmental or insensitive.
EMPATHIZING WITH THE PATIENT/FAMILY WHAT HE/SHE FEELS AND EXPERIENCES
Empathy is an essential component of counseling and active communication. It means expressing to the patient/parents that you understand their concerns and agony and respect their feelings. Try to find out occasions, while talking to the patient/parents, where you can show empathy. Using empathy is a great skill which makes the person comfortable from inside that doctor understands his/her worries and concerns. If you empathize then parents may share several things and enrich patient's history by telling things without being asked.7
If a child patient with respiratory distress comes to casualty and you show empathy to the parents by saying “I can understand you are quite worried about the child”. Father may tell you in chocked voice that “he lost elder child with similar complaints 2 years ago”. You can imagine the kind of feelings and apprehension this family has which you do not know when patient walks in the emergency room. You can identify with the pain and anguish of the family by saying “loosing child is always very painful to parents”. This is empathy. If you say “it was so bad, God willed that way”. This is sympathy and this does not sooth the traumatized feelings of the parents. So do not show sympathy and sentiments.
The next important step in counseling is building confidence and checking understanding of the patient/parents. It is very important that you must assess what patient/family has understood about the disease and its treatment at the end of conversation. The steps as mentioned in Box 4 can help in building the confidence with parents.
ACCEPT WHAT PARENTS THINK, BELIEVE OR FEEL
It has been seen that disagreement during conversation with a person on a mistaken idea makes him/her annoyed, resistant and possessive of his/her ideas and opinion. In turn he/she often loses confidence and does not accept suggestions. Agreement with a mistaken idea is vulnerable because then one cannot offer suggestions for correction later on. Therefore, one should neither agree nor disagree with the parents or patient if they harbor a wrong and unscientific idea; instead a neutral response should be given. The neutral statement could be in the form of reflecting back or empathy.8
A mother says “my 1-month-old daughter cries in the night and wants breastfeed too often. She perhaps remains hungry as my milk is not enough for her”. Doctor can say that mother's milk is never in short supply. Child feeds two hourly in early infancy throughout the day including night and circadian rhythm of the infant is such that he/she gets up in the night and more playful; your baby is alright. These statements are scientifically correct but smell of disagreement. Mother may not be satisfied with this response. Rather she may lose confidence as she may feel she does not know physiology of her child. However, if doctor says to the mother that “you are obviously worried about your child”, “both of you then are not able to sleep”, “I understand you are worried about breast milk supply” he is seen polite and gives feelings of being sensitive towards the mother. These statements are showing empathy and giving neutral response to the mistaken idea expressed by the mother. Another example, a mother comes with her daughter to the Well Baby Clinic. The nurse advises immunization to the child, but she refuses citing that it will cause pain and fever. What will you say?
- No, you should not refuse immunization. It will prevent many diseases.
- There will be some pain and fever, but benefits outweigh these.
You are concerned with the discomfort the immunization will cause? Is that so? Accept what the person thinks and feels in a neutral fashion.
IDENTIFY WHAT PARENTS/PATIENT ARE DOING RIGHT AND PRAISE FOR THAT
Praising is liked by every individual. This boosts the morale of the person, enhances confidence, makes him to do same thing again and again if appreciated for that and encourages him/her to accept suggestions given by the person who praises him/her. Doctors have to learn praising as a communication skill. They have to find out something being done right by the parents or the patient himself/herself and praise them for even in worst scenario.
A mother brings 1-year-old child to the OPD with the complaints of loose motions and fever. Child is feeding on diluted cow's milk by bottle from the age of 3 months and is malnourished. Mother is carrying old patient record including discharge ticket given at birth. A doctor generally becomes judgmental in this situation and accuses the mother for being responsible for this sorry state of her child. Remember mother will never harm her child. So how can a doctor praise the mother in this situation? See mother is carrying old patient record and a discharge ticket indicating birth weight and other information. Doctor can praise the mother that old patient record will be very helpful in understanding the situation and managing the patient. It will boost her morale and she will feel happy.9
GIVE RELEVANT INFORMATION
Doctors are busy persons. They should use communication skills that encourage parents/patient to tell history correctly and convey the message that doctor is sensitive and empathic. It is very important that doctor gives relevant information about the disease and treatment in one sitting. One or more sittings may be arranged depending on the course of the disease and situation. A mother comes to Well Baby Clinic for immunization of her 6 weeks old infant. Mother may be given information about the three doses of pentavalent vaccine, oral poliovirus vaccines (OPV) and Rota virus vaccine which will be administered at 6, 10, and 14 weeks of age. Pneumococcal and fractionated inactivated polio vaccine will be administered at 6 and 14 weeks of age. Child may have some fever for which medicine (paracetamol) will be given. Breastfeeding should continue. There is no need to tell about Measles-Rubella (MR) vaccine at 9 months and then booster doses of diphtheria-pertussis-tetanus (DPT), etc. at this time. This is relevant information.
The relevant information should be in positive manner. Negative information is perceived as threatening and may down the confidence of the parents/patient if they are doing that. For example, information on excessive viewing of the mobile by the child can be given by two ways:
- If you spend more time on mobile chatting, you will fail in the examination. Mixed feeding or top feeding will cause diarrhea and pneumonia. These are relevant information albeit in negative frame.
The information should be provided as a scientific fact in general terms and not specifically addressing the patient or the parents. The language should be simple and comprehensible by the nonmedical person. Remember, even well-literate people do not understand medical terminology.
MAKE FEW SUGGESTIONS NOT COMMANDS
Doctors are trained to give orders. Even the prescription paper begins with R. This tells “I order in the name of God” the following medicines. Command or order is not liked by any person. Commands are not generally adhered to. Alternatively, suggestions do make a difference. Suggestion gives a person choice and authority to carry it out or not. How one will feel if somebody says, please close the door or will you please close the door? Former is an order to close the door; there is no choice. But later statement gives a choice to the person to say no if he does not want to close the door. Former is a command and later is a suggestion. After giving primary immunization to a 6 weeks child, the nurse tells the mother to come after a month for second dose without looking at her and busy in writing records in the register. Obviously, immunization coverage is not satisfactory. If nurse says to the mother that three doses of pentavalent vaccine will prevent diphtheria, pertussis, tetanus, hepatitis B and Haemophilus influenzae meningitis (use local language for the diseases) in the child. You are a good and responsible mother that you were on time for first vaccination. The next immunization will be after a month say on January 29. Can you come for immunization? Now mother will think for a moment and can say yes. It is possible she may say “no, I have parent child meeting (PTM) in my elder son's school or there is family function. I cannot come on January 29”. Now nurse may give mother other suggestions like immunization can be done after 4 weeks. So, nurse can suggest that she can come on January 28, for immunization. It is important to give suggestions and not commands for carrying out treatment and taking informed consent. This is a very useful communication skill which is immensely appreciated by the parents and the patient.11
CHECKING UNDERSTANDING OF THE PATIENT/PARENTS
It is not enough to give relevant information and suggestions. The parents/patient has to understand the disease, its implications, treatment modalities and long-term effects including adverse effects of the drugs and nutritional rehabilitation. Doctor should always determine that parents have learnt and internalized the whole conversation about the disease. It should be done in a manner that it does not sound like appearing in an examination. Doctor can start by saying, well we have discussed many things today. Can we revise or recollect what we have discussed? Now information may be elicited and supported and completed by the doctor. He may finish the session by assuring the parents that at any time, something is not clear they can approach him.